Jayne Lytel and Dr. Fred R. Volkmar
Author; Director of the Child Study Center at the Yale School of Medicine
Tuesday, November 18, 2008 12:00 PM
Can a child recover from autism? After receiving several different kinds of therapy, Jane Lytel's son may be one of the few children to do so.
She was online Tuesday, Nov. 18 at noon ET to discuss her son's journey. She was joined by Dr. Fred R. Volkmar, one of the world's leading autism experts and the director of the Child Study Center at the Yale School of Medicine.
Columbia, Md.: When did you notice the significant change in Leo's behavior/ability to relate to others? I, too, have an autistic son who is 5 and am starting to notice big improvements -- but not to the point I'd say he was "cured." Just curious.
Dr. Fred R. Volkmar: This is really a question for Jayne more than me but there does seem to be something important about age 5 -- after that time it seems to get a bit harder for children to make major gains. Some children seem to go to age 4 or 4 1/2 and then take a big step forward
Jayne Lytel: Glimpses at 3 but not until he was 4 years old. Even then, the work was ardurous. By 6 he had turned a significant corner.
Harrisonburg, Va.: Jayne and Dr. Volkmar,
In reviewing the various treatments that you pursued with Leo, I did not see nutritional supplements or diet mentioned. Was this a part of his treatment also, but not identified in this article, or did you choose not to go this route? The reason I raise this question is because I too have a son on the autism spectrum. He is now 19. For four years he was on nutrition supplements, and in that time, he has recovered in significant ways, so that he is able to go to a major university and blend in well academically and socially. Four years ago, that was not the case and I was concerned that he might end up spending his adult years in a group home.
Dr. Fred R. Volkmar: More and more children are doing better and many are going to college. The actual data relative to vitamins and diet treatment are not as strong as we'd hope -- most of what is out there is anecdotal reports and the science has not been as supportive. Regardless of that it it great that your soon is doing well. There are a number of books on college programs that may be of interest -- go to amazon or one of the other Web sites and type in autism and college
Silver Spring, Md.: Is there a age at which Applied Behavior Analysis (ABA) therapy is no longer productive? If a child starts ABA at 2 years old, would that child still require it at 8? At 10? Older? Thank you.
Jayne Lytel: From my experience, we started with a form of play therapy called Floortime and then switched to applied verbal behavior (AVB), which is a form of ABA. When my son seemed to gain all that he could from AVB, we focused more on Floortime. I don't think you can generalize the age at which ABA is no longer productive. I also believe the severity of a child's symptoms play into the answer.
Fairfax, Va.: I have a young daughter who displays many autistic tendencies. Unfortunately, she also exhibits extreme anxiety and hostility around strangers. If someone new approaches her, she will sometimes growl. The question I have is how does one communicate this to others? I mean, there is this notion in our society that all children with special problems are supposed to be sweet. How does one get people (especially other young children) to understand that their well-intentioned efforts to make friends with my daughter might not be rewarded with gratitude?
Dr. Fred R. Volkmar: As you point out, often the stereotyped view is children with disabilities are 'sweet' all the time and in all situations. And this just isn't so -- as is true for all children. The problem needs to be attacked from both side -- helping the child come up with a more appropriate response and helping strangers understand not to move to quickly to make a relationship. There are some good video and book resources available about teaching social skills -- visit our web site www.autism.fm and/or coulter video (has a new video on teaching manners)
Good luck .
Arlington, Va.: Given that Autism is defined as difficulties with social communication, did you find that the therapies that helped your son were mainly focussed on social communication therapies, or were also other therapies, such as dietary ones effective? And can you also name your top five most effective therapies.
Jayne Lytel: Definitely focused on the social therapies since that is the hallmark deficit of autism spectrum disorder, at least from my perspective.
Top therapies for me:
1. Applied Verbal Behavior and Floortime
2. Speech therapy
3. Occupational Therapy
4. Social Skills Groups
5. Inclusion school (not pulled out but mixed in with typically developing peers so he could learn alongside them)
Leo did not have a distinct medical condition that would call for a special diet, so I didn't pursue it.
Jayne Lytel: Hello, Thanks for joining us. I'm Jayne Lytel, author of Act Early Against Autism: Give Your Child a Fighting Chance from the Start (Perigee) at www.jaynelytel.com. I also have a nonprofit, The Early Intervention Network, on autism spectrum disorders at www.actearly.org
Washington, D.C.: I realize your answer would be anecdotal, but did you start to see symptoms appear after the MMR vaccine at 1.5 years? As the mother of an infant who is very worried about the possible connection between the measles portion of the MMR vaccine and autism (despite many studies to the contrary), I am considering delaying his MMR shots until he is a bit older and/or splitting the shots up. What has your and others' anecdotal experience shown about the onset of symptoms of autism and would you recommend or not recommend delaying the MMR vaccine?
Jayne Lytel: I did not notice any difference after my son received the MMR vaccine. I am not a proponent that a link between vaccines and autism exist.
Insofar as the MMR vaccine goes, there is a window of time to administer the vaccine. I'd suggest you talk to your pediatrician about this as well as splitting up the vaccine. Gather the facts first and base your decisions on them and not fear.
Cheshire, Conn.: My little guy turns 8 soon. He's mainstreamed, verbal now (he wasn't at 2), wants play dates, wants company, he's a major goof and silly. He's wonderful and I know he's smart. We're waiting for Yale's eval and I check the mailbox every day yet I know they won't take the dx away at this time. Can Dr. Volkmar talk about at what point you can look at a child with autism and get a sense of what's in store for him as an adult? Like you, we got him the best, the very best and we did an early intervention home program and we left our home in another state to get him the best. Lastly, while I know early intervention is key, I am curious about the therapeutic opportunities for my son and his chance for success even though he's outside of that early intervention period. Can Dr. Volkmar comment?
Dr. Fred R. Volkmar: It is hard to predict the future for anyone -- at the moment it is sunny in New Haven but I'm not going to give anyone absolute assurance that they won't get struck by lightening.The same general principle applies in autism -- people have to be very careful about predicting. Kanner (who first talked about autism) did notice that in adolescence some children make a turn for the better, others unfortunatley for the worse -- this complicates life even more.
All that being said the things we start to look AROUND AGE 5 years are a) the level of nonverbal cognitive ability -- better if this is in the normal range, b) whether the child has some functional language (real word use not just echoed langauge). Both are positive prognostic signs. Also we start looking at adaptive skills as children get older -- how can they translate what they know into real world settings.
Hope this helps. Fred Volkmar
Oxford, United Kingdom: Dear Jayne,
Well done for your hard work. I am convinced you did the right thing for your son. My older son developed motor tics at the age of about 7 and by now he has been diagnosed for Turrett's Syndrome. Like autism disorder, Turrett is diagnosed if you have both motor and vocal tics for over one year. He is academically bright, has good sporting ability but has lagged relative to his peer group in emotional maturity by about a year. To an adult looking on, his behavior would look quite 'normal' but he has found it extremely difficult to make friends. He yearns for friendships, works very hard to get them but over time, they simply disappear. He is also small and thin of stature and finds himself picked on in the play ground. Five years of this kind of treatment has been very painful and left him with poor self esteem. He seems to be making a great start at his new senior school (he is now 13)and I want to make sure he gets all the support during the vulnvrable teenage years. Are you aware of any behavioral and social therapy that might work for him?
Jayne Lytel: My familiarity with behavior modification is with applied verbal behavior (AVB). You can read more about it at www.behavioranalysts.com/ I can only suggest resources, not provide specific therapeutic advice, as I am not a doctor and even if I were you'd need to take your older son to a professional who is schooled in behavior modification techniques.
Wokingham, UK: I know two families with autistic children and I wonder a lot about their prospects. At present, children who are designated as autistic receive, on both sides of the Atlantic as far as I know, quite a lot of support. Teachers make special plans, educational psychologists rally round, parents are offered plentiful advice. I know that some autistics are so badly afflicted that they cannot respond to any of this. But would you say that those who are able to respond to the support currently offered are usually enabled to receive an at least approximately normal education and to have reasonably normal life chances?
Dr. Fred R. Volkmar: On balance children with autism (strictly defined) are doing better and better by several different metrics -- the number who talk, the number who are self-supporting adults, the number going to college.
That being said some children -- even with good programs -- don't do so well -- sometimes we can understand this (or think we do) and other times not.
Children who are doing well now are more and more able to participate in regular community life including normative educational settings.
York, Pa.: What new print resources are available describing activities to do with a 9-year-old boy with autism to help develop appropriate social behaviors?
Dr. Fred R. Volkmar: Many. Go to www.autism.fm and look at the resource list.
Baltimore, Md.: I have a 16-year-old nephew who still does not speak. Are children such as my nephew candidates for group homes? What will there future be like?
Dr. Fred R. Volkmar: The answer depends both on the child and family. For many adults this is an option -- esp. if they don't talk.
Annandale, Va.: I want to encourage Jayne Lytel in her quest to help her son. I have an 18-year-old son who was diagnosed at 20 months old and has just applied to his first college! We are encouraging him to live on campus. While he was successful academically in high school, I would say socially he has been somewhat isolated. Can Dr. Volkmar (or anyone) provide advice to make the transition to college life a bit easier for these kids? I have found that most of the research/attention for autism is focused on highly-involved young children. Help in guiding high-functioning young adults is less available and sorely needed. Is it because these kids are "cured"? Perhaps technically -- they have moved along the spectrum to the point where the diagnosis would unlikely be confirmed. But there are still residual issues especially in the social/human interaction realm.
Dr. Fred R. Volkmar: Yes. There are several good books on this and several in the works. go to amazon (or some such) and type in college and autism, or college and Asperger, or college and LD. The important thing to realize is that a) the law for college is very different from that for school (school is a right in the US college is NOT)/ College issues are covered by other laws including the ADA (disabilities act). It is critical that the student SELF IDENTIFY (parents can not do it for them) to the college disabilities office which can they get them extra support as needed. Also important to think about ways to support students for the nonclassroom needs.
Northwest DC: I work with someone who I believe has Asperger's syndrome. His symptoms match, to the letter, the description I found on the internet. This man is 46, single, but acts like he is about 15. Obsessive interests in only a few subjects. Jerky walk, clumsy movements, exaggerated motions. Some speech impediments (tongue tied sometimes). But he's very bright, friendly and thoughtful. When he's around the conversation focuses on his activities, his interests, his life. Is there a 'cure' for Asperger's or do we just learn to tolerate his idiosyncracies?
Dr. Fred R. Volkmar: Visit www.asperger.fm for a pamphlet on diagnosis and another on treatment of Asperger. Change can happen at this age but isn't usually very easy.
Richmond, Va.: I have heard that chelation is very dangerous. But then I've also heard that the few kids who died from this process were victims of malpractice -- that the doctors who administered the treatment did so incorrectly. Can you set the record straight? And is chelation a worthwhile treatment to pursue?
Jayne Lytel: The National Institute of Mental Health recently scrapped testing this fringe autism treatment, after reviewing animal studies that suggest chelating agents can cause cognitive damage.
To me, chelation is one of those therapies where the promise of hope speaks louder than the findings of science.
Great Falls, Va.: I have four sons. Our eldest, 10, has autism. We had twins two years ago and one of them was diagnosed with autism a few months ago. Do you have any info on brothers in the spectrum? Is their recovery rate similar to each other (our 10-year old is improving and is HFA) because they share genes?
Dr. Fred R. Volkmar: As you are aware there is a very significant genetic risk to autism. I am not aware of much predicting relative to one sib and another -- in the real world one sees everything (e.g., identical twins with autism where one does better than the other).
Fort Worth, TX: Hello. I tutor autistic children and suspect that a friend's daughter show signs of autism. What are effective ways of bringing that to my friend's attention? I fear the parents will be in denial and don't want the child to go further without intervention and therapy. Thank you.
Dr. Fred R. Volkmar: Many excellent resources go to american academy pediatrics web site and type autism or CDC and type autism or FIRST SIGNS.
Chevy Chase, Md.: Is there an optimal frequency (hours per week) of therapy (speech, occupational, ABA, etc?) that may elicit the best result to help bring a child up to a level where they are no longer on the spectrum?
Jayne Lytel: The book, Educating Children with Autism, recommends at least 25 hours a week, but whether that will pull a child off the spectrum is not something anyone can predict. I recommend this book, which you can read online at www.nap.edu
Baltimore, Md.: This kind of article is so frustrating to read. Autism is not a disease that can simply be cured; it is a mental disorder. To suggest that a child can recover from autism, as if it were simply a bad cold, offers parents and families of autistic children false hope. I've seen families torn apart by desperately searching for the cure that will make their child normal -- so much time is wasted on cures that do not work, the child does not get essential treatments that are known to help. And if the child does not become normal, the family feels that they failed or didn't try hard enough. I am a sibling of an adult autistic person, so I understand some of what you've gone through, and I'm happy for you that your son is doing well. But please do not say that he "recovered from autism", because that is not possible.
Dr. Fred R. Volkmar: Often when I hear a child described as cured I'm very skeptical -- often the child has still got some oddity or unusual feature or problem. That being said I have seen a handful of children who appear to have had fairly classical autism and have done very well indeed.
Gaithersburg, Md.: This is off the topic of recovery from autism but I thought I would try asking Dr. Volkmar anyway. My daughter is "on the spectrum" (her diagnoses, over the years, have included NLD, PDD-NOS, SPD and (clearly wrong) ADHD.), but we were told by a developmental pediatrician that she does not meet the criteria for AS because her verbal IQ is not high enough (it's 85); otherwise, he said she appears to meet the criteria. Do you agree that one needs to be smart to have Asperger's? If we consulted a different doctor, might the diagnosis of AS be revisited?
Dr. Fred R. Volkmar: As Buddha (I believe) said, "If you lived long enough and stayed in one place you would see everything."
IQ is not so much the issue as clinical picture. One of the more 'classic' cases of Asperger's I saw some years ago fit the model in some ways -- child was fascinated by deep fat fryers, would walk into a restaurant and have to see the deep fat fryer, knew all about them, etc etc. Socially he was quite disabled BUT he had a history of language delay and IQ < 70 (usual cut off for mental retardation/intellectual deficiency) BUT he had a history of a significant birth defect that left him essentially deaf for the first year of life until corrected with multiple surgeries.
Paris, France: My son was diagnosed with Pervasive Development Disorder Not Otherwise Specified in France about a year and a half ago. He is 7. His case has always been tricky because he is high functioning in many ways. And he has come a long way since that diagnosis, but one area which still concerns me is his apparent lack of interest in seeking out friends. He plays well enough with others at school, apparently, but NEVER asks to see friends or have play dates. Are there any strategies you can suggest to encourage such interest? Thanks in advance for your response. And I'm also going to look for your book on Amazon.
Jayne Lytel: Dr. Volkmar may have other suggestions, but from a parent's perspective what was key for me was knowing my son's interests and using them to encourage play with other children. He loved, for example, confetti poppers and throwing water balloons in the summertime, even throwing eggs at trees. Not all play dates worked out, however. They were very stressful for me. In the end, I had to hire babysitters to facilitate them.
York, Pa.: How can we determine if our 9-year-old son with PDD-NOS is eligible for and/or will benefit from new therapies?
Dr. Fred R. Volkmar: Your school and/or health care providers ought to be keeping up with things - if you visit the various Web sites you will find links to many new treatments. Try www.autism.fm.
Ashburn, Va.: My son was diagnosed as PDD-NOS at 30 months. Lately he's been having issues with sleeping. He has no problem falling asleep; however he wakes up very early hyper and excited. His developmental pediatrician recommended Melatonin before bed which seems to work for several hours. He's taking 1 mg before bed. Is there anything else we could do to help with his sleep issues?
Dr. Fred R. Volkmar: This is a common problem without much good data to answer. There are some excellent resources -- try Mark Durand's book ("Sleep Better" is title I believe). There are some behavioral methods as well as medications.
Richmond, Va.: What impact do you see, if any, on sugar and diet to children with autism? How important is it to change diet? We tried the gluten-free diet briefly with my son but didn't seem to see any improvement.
Jayne Lytel: The diet wasn't part of my son's intervention, though I know many parents who believe in its merits. While we all want our children to eat nourishing food, eliminating food when there is no medical condition can set up a child for psychological stress -- viewing foods as bad or that they're different because they need to eat a certain way. Sorting through autism treatments is confusing, but the window of time to heal a child is narrow. Why not try the therapies with the most scientifically proven strengths first?
Spokane, Wash.: I have 9-year-old son who spends much of his time reciting TV scripts and stories and therefore spending time in his own mind. His academic skills are slightly below his grade level and he can play well with his sister when directed. We are trying to get him more in tune with his surroundings. I know he needs down time from school to decompress, but I also feel he needs more structure time to help adapt to the world around him. What types of therapies would you recommend for his down time if any?
Jayne Lytel: Let me just speak from my own experience. My son loves to play PSP and computer games. I don't always like it, but one of Leo's doctors said that if he needs to play the computer for 15 minutes to, say, recover from something that upset him, then let him. I do, but I understand the need to pour on the therapy 24/7.
West River, Md.: I have a son who started receiving early intervention at age 2. After his initial evaluation (by early childhood intervention staff), he exhibited "many red flags" for being on the autism spectrum. Another evaluation was conducted a little over a year later by a developmental psychiatrist, and he concluded that he, too, saw many signs of autism but because of my son's rapid progress, he felt comfortable leaving him labeled under the catch all of developmentally delayed. I know that it is easier to receive services if a child is labeled as being on the spectrum of autism, but I am unsure whether this is a label I want placed on my son in his school system files at this juncture. Any thoughts? Sometimes autism/ASD just seems like the label du jour, similar to the ADD/HD wave in the late 80's to 90's...
Jayne Lytel: I felt the same way. When our journey started, we lived in Syracuse, NY, and the label of autism did provide us more services. Three months later, when his diagnosis was revised to PDD-NOS, that allowed "me" to escape the devastating word autism. In the District of Columbia, where we now live, the diagnosis of autism didn't get me any more services. In fact, that diagnosis steered him into programs that were clearly not appropriate for him. You'll need to understand the landscape of your special education environment to make the right decision for your child.
current research: Hi. I am a speech therapist and would like to strongly encourage your readers today to review the original ABA study and the multitude of peer reviews following it, AND the current data on the presence of mercury or other questionable elements in immunizations. The original ABA study was based on a very small sample size, using a single receptive language test (not standardized on those with autism) and has been shown to contain many experimental and analytical flaws. In my opinion ABA is highly suspect as a valid therapy option for anyone. There is little but loosely organized anecdotal evidence to support this treatment. Please keep investigating to find other options which are supported by clinical and research data. Secondly, study after study has conclusively pointed to ABSOLUTELY NO LINK between immunizations and autism. Please, for the protection of your own children and society as a whole, get the vaccinations your child needs.
Dr. Fred R. Volkmar: There is an excellent summary of the effectiveness of early intervention program in EDUCATING CHILDREN WITH AUTISM from the National Research Council. You are correct that the first study was more optimistic than subsequent ones -- still improved, overall, in terms of outcome. There are a range of good and empirically validated intervention techniques
Annapolis, Md.: When children with autism turn 18 years old, what happens? Would such a person qualify for disability? Does the MRI prove autism to satisfy a disability claim? How does one deal with the costs that just stretch on and on?
Jayne Lytel: Unfortunately, there are a lack of services once children age out of the services provided under special education law. Support groups for parents of older children should be able to offer specific advice for where you live. You can find these groups through local chapters of the Autism Society of America or a faith-based group or social service agency. For me, I'm still recovering from the costs, and I have no idea what my retirement will look like.
Alexandria, Va.: My autistic son will turn 11 next month. While he has made some progress, he is still non-verbal, with intermittent social interaction. He has had speech and occupational therapy since his diagnosis. At his age, is there any thing else that we can do or should we resign ourselves to the fact that he will not get much better?
Dr. Fred R. Volkmar: Children continue to grow and develop. Without knowing your child is it hard to give specific advice to you. A focus on practical (daily life skills) is important -- the goal (regardless of ability level) is to help people be as independent and self-sufficient as possible
Jersey City: Dr. Volkmar -- I think you missed the point of the question about how to tell a friend you have reason to believe his or her child is on the spectrum. The issue isn't what are the signs; the issue is how (and I suppose if) you tell that to a parent whom you suspect isn't ready to hear, but whose child you think could benefit from early intervention, stat.
Dr. Fred R. Volkmar: You can delicately raise the issue with them -- there is not a single answer to this. Often in situations like this it is grandparents/relatives or occasionally the health care provider who talks to parents and connects on the issue.
Midwest: I have a child who after being tested for everything from ADHD and autism, has been diagnosed with sensory integration disorder. Now I am hearing that this may be placed in the autism spectrum and classified as a form of autism. Is this true?
Dr. Fred R. Volkmar: There is not (technically) an official diagnosis of sensory-integration disorder. Sensory problems are common in children on the autism spectrum BUT are also seen in other children with developmental problems
For autism and related conditions, troubles in the area of social interaction are required.
Columbia, Md.: One thing I find disturbing in your story and in so many others about raising children with autism is how any serious attempt to improve a child's abilities requires the parents to give up so much (time, effort, money) to make it happen. I know people who have given up jobs, given up plans to have more children, sold their homes to finance therapy and spent ridiculous sums on legal fees -- all without any guarantee that doing so will make a difference. You were very, very fortunate that you were able to help your son so dramatically. I'm still holding out hope for my son -- he's now 7 and still almost entirely non-verbal, spends most of his time stimming, isn't potty trained, is self-injurous -- all of the things we had hoped we could improve since his diagnosis six years ago. I wonder how many of the kids who COULD improve ultimately don't because their families simply don't have the ability to make the necessary sacrifices and can't afford the therapies that help. I hope that stories like yours make people realize that there is a societal benefit to providing services early to improve long-term outcomes. We -just- got off the five-year-long waiting list for services in Maryland through the state autism waiver -- I wonder sometimes if we had had those services six years ago, would my son be "cured" now, or at least significantly better off.
Jayne Lytel: Certainly, there is no guarantee, even with early intervention. One point that I didn't bring out in the article was that our family suffered a bankruptcy, partly because of the cost of my son's therapy. I wouldn't have done anything differently, however. I hear sometimes people call me "lucky" or "fortunate" but it wasn't luck. His progress came at great personal, emotional and financial sacrifice.
Cincinnati, OH: When our son was diagnosed PDD-NOS in 2002 I was shocked by the lack of an integrated treatment plan or even an attempt at prognosis. The hospital basically sent us out on our own to find treatment in the vast array of pseudo-scientific therapies and snake oil salespeople, their waiting lists were too long to ever get in we were told. We went to Boston to a friend who is a pediatric neuropsychologist and she described the system there as being much different. Diagnosed children were immediately connected with therapeutic interventions based on scientific evidence of success and regularly re-tested. With the increasing numbers of diagnosed children across this country are we getting any closer to a treatment model that is more consistent and effective? What is the status of testing to isolate variables of success and better predict outcomes or appropriate interventions?
Dr. Fred R. Volkmar: It is interesting that, in the US, I am always impressed by regional variations -- sometimes from state to state, at other times (as in my state) within the same state. There are a number of states with good programs, some with not so much at all. A handful of states have made a statewide effort to coordinate sevices. In other states there are agencies (often including parent support groups) that are very active
South Riding, Va.: I heard trampolines are good for kids with autism. If we take all the safety measures, net, cover the spring, etc., do you think it really is therapeutic?
Jayne Lytel: I found a Web site that listed 500 treatments for autism specturm disorders. If a child enjoys jumping on a trampoline, that's great. But I wouldn't get a trampoline at the exclusion of therapies with the backing of science behind them.
Maine: I have a 5-year-old nephew with autism who is making great strides in language and other skills. My question is how to help with the interactions between him and my own two children who are younger. Their volume and level of activity stresses him out, and we usually see him at holidays when his schedule is messed. My 3-year-old is starting to realize that her cousin has different rules and expectation and asks questions, but basically believes that he is her best friend. How do I help makes this a positive relationship all around?
Jayne Lytel: You might be interested in the book, "Siblings of Children with Autism: A Guide for Families" by Drs. Sandra L. Harris and Beth A. Glassberg. They recommend that parents begin as early as possible to explain autism in a way that will be meaningful to the child without autism.
Olney, Md.: How narrow is this window of time? It sounds like you worry that people could focus there energy on wrong therapies. Is there a place or resource that has the "more scientific therapies listed," for example the DAN and most of the autism organizations, Jenny McCarthy seem to be focused on diet, environment, the immunization link, etc. Most of the resources out there seem to be pushing me toward focusing on diet and fear about further damaging my son if I expose him to the wrong chemicals. Your story enlightened me as it was the first I have read that didn't list diet as the primary cure.
Jayne Lytel: I've said this before: Don't let the promise of hope speak "louder" than the findings of science. It's easy to get whipped up into the world of alternative therapies because of the anecdotal evidence. Stick with science.
Herndon, Va.: Is there a correlation between autism and inner ear infections?
Jayne Lytel: That was a question I got asked a lot when my son was evaluated. But I don't know the medical answer to that.
Luck versus hard work: I don't deny that you worked very hard to achieve the results you've seen in your son, but it WAS fortunate as well. The stories that make it to print are the ones with a happy ending. I suspect (and know from my own experience) that a family can work just as hard and give up just as much and still end up with no particular improvement.
Dr. Fred R. Volkmar: Sadly not every child gets better and we can't always predict who will and who won't. if it were my child of course I would try whatever I could.
Olney, Md.: Antoher question if I may: My son is in a county pre school program for early intervention that is about 15 hours a week -- and he gets private OT. Could you relate what a 25 hr per week therapy schedule looks like? Which elements are the time consuming ones? Is it possible that my son does not need that intensity? (We are blessed that he is already very verbal at age 3.) Who is the best type of medical professional to help someone quarterback all of these therapies?
Dr. Fred R. Volkmar: There are a number of different models out there some (for preschool children) that have a strong home component -- see educating children with autism for good discussion of these issues and yes having some professional to serve as a quarter back is a good thing. Issues in terms of intensity are complex given differences in program content (as noted above). Sadly we tend not to always do such a good job of coming up with an individualized program as we should
Cheshire, Conn.: Can you both comment on sensory therapies for which there is little scientific evidence? Traditional speech therapy failed my son yet the hipotherapy did wonders. It was the weirdest thing. I never would have brought him for that. I never believed it would help him but the eval team out of state mentioned it on the side.(And it wasn't the motivation of the horse for him.) I promise not to ask any more questions) and yes, Dr. Volkmar's answer to my previous questions was helpful and hopeful.
Jayne Lytel: My occupational therapist recommended a "sensory" diet, and I worked to comply, nothing like horseback riding therapy (hippotherapy), though I did explore it. My son doesn't like horses, however.
Dr. Fred R. Volkmar: I am about to log off to go introduce our grand rounds speaker today
Thanks for having me.
Richmond, Va.: Do you have any idea how many children enrolled in public school special ed programs also receive additional outside behavioral therapy or other interventions? How common is it for parents of special-ed children with autism to also seek outside therapy for their children? And what therapies would you recommend?
Jayne Lytel: I don't know of statistics on this, but I know of families who supplement their child's program with other therapies, particularly when the school system does not cover it. In some areas of the country, school districts don't want to cover behavioral therapies.
Therapies, of course, need to be tailored to the individual needs of a child. I had great success with applied verbal behavior and floortime.
Falls Church, Va.: It may be worth noting that many researchers consider autism to be a syndrome of developmental DELAY, not stasis. Some children do continue to improve simply with time. Thus, it is entirely plausible that an autistic child might show spontaneous improvement or even seem "cured."
Jayne Lytel: I would not rest on this assumption and "wait and see" what happens. Think of the guilt you'd feel.
Silver Spring, Md.: Thank you for sharing your story. Do you recommend a resource that can help us determine which therapies are more scientifically valid (maybe its your book?) The Web is a confusing place.
Jayne Lytel: Right, well I think I do a pretty good job of describing the difference between floortime and applied behavior analysis in my book. One of the special needs guides on About.com got permission to excerpt this part of my book. You can probably google to find it. I also have on my blog -- www.actearlyblog.org -- a link to my Shelfari bookcase that lists all the other autism books I recommend.
www.washingtonpost.com: Jayne had to sign off, but she enjoyed today's lively discussion.
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