Treatment for Autism

Questions

• Most effective treatments for Asperger Syndrome for 4YO
• Seeing improvement after treatment but am I doing everything I can?
• Toddler With Autism- Therapy Opinions?
• Autism Early Intervention Centers for 2-y-o
• Autism home programs 

Most effective treatments for Asperger Syndrome for 4YO

Jan 2011

My four year old child was recently diagnosed with Asperger Syndrome. He currently receives weekly one on one sessions with a child therapist as well as weekly structured play sessions. We are considering additional speech and OT therapy.

I heard that intense ABA therapy works well for moderate to severely autistic children. However I want to hear from parents and professional who works with high functioning/Asperger kids. How beneficial is ABA therapy for improving social skills in Asperger kids?

If it is beneficial, what's the typical number of hours per week of therapy to really make an impact? (I've heard of moderately autistic kids receiving 25-40 hours/week). I know every child is different as is mine. Would really appreciate your honest feedback. Thank you. Chris

ABA can be a tricky thing with a child who is mildly on the spectrum because it can be very rigid and repetitive. However, ABA is not your only option and there are several other methods that would put more emphasis on social skills. (Floortime is the only one I can think of right now). Whichever way you go, though, the success of the program is going to depend on the skills of the service provider. You can learn to do it yourself or you can hire an agency to do it for you. My son has high functioning autism, not Aspergers, and we used BIA (www.bia4autism.org) They are ABA-based but are very flexible with their approach; they called it ''the whatever works method,'' and the flexibility of their program was hugely successful for my child. Our program started when my son was 3 1/2 and ended 2 years later when he started Kindergarten. It was 15 hours/week and there was never a break; no vacations, no days off more than one or two in a row. He was almost completely nonverbal when they started and the results were instantaneous. Hope that helps! Feel free to contact me directly if you'd like more info. Jill H

Instead of ABA, I would look at RDI (Relationship Development Intervention), which mirrors typical child development. You can get more info at RdiConnect.com Are you under the care of a developmental pediatrician or a psychologist who can give you guidance based on your child's individual needs? It's good to have a ''big picture'' health provider who can point you in the right direction. I'm planning on taking my son to Susan Johnson, a developmental ped in Colfax (youandyourchildshealth.org). We currently see a well-respected developmental ped, but I need a new perspective. Hope this helps!

Seeing improvement after treatment but am I doing everything I can?

March 2008

My son was diagnosed as being on the autistic spectrum. Five months ago, when we received the diagnosis, I felt so hopeless. Now, after working with therapist and using a bio medical approach, my son has improved so much. So now I have two questions on this 1) Am I doing everything I can to make sure that he continues to improve and learn? 2) I know that most experts say that autism never goes away/there is no ''cure'', but have any of you had experience to the contrary? Maybe I'm just kidding myself, but I've seen so many great changes in my son, and family and friends are saying the same thing. I have thoughts that in a couple of years, he'll be a ''regular'' kid. But is that really possible? I'm trying to remain hopeful, but I also want to be realistic about the future. Concerned Mom

I do not know if autism ever goes away. I do know that childhood does. Don't loose your sons childhood chasing something that may or may not happen.

I have a 5 year old who has been diagnosed with autism. We have learned to make decisions based on ''at what cost''. I do not mean financially. I mean at what cost to my sons dignity, the trust he has in me, and the family as a whole.

I have called it ''The Velveteen Rabbit'' method. I love Sam so much his fur might get worn off. Knowing there is profound unconditional love surroundng him I belive he will know he is whole and okay. I belive in retrospect this is the most important thing.

Find people you trust to walk with you on the long path ahead. Therapists will come and go as the system requires. Some will be more connected to your family than others. I suggest you search for one or two people who will walk with you for the long haul. I was raised in the Bay Area and now live in PA. Dr. Ann Parker in Berkeley is one of those people for me. She has expertise in neuro developmental disorders but looks at the whole situation with uncommoly good common sense. The other person is Rebecca Klaw in Pittsburgh. She has a background in education and autism consulting.

Your son is still the same little guy he was before the diagnosis. Go hug him and remember to make plans mindfully. Please let me know if there is something I can do for you or you would like to talk. Warmly, Kate

Well, part of your question made me chuckle to myself. ''Am I doing everything I can?'' That's a question that my friends and I ask ourselves 24/7. I suppose you could stop sleeping and spend your nights making PECS cards; are you doing that?? That's not a serious question, of course, but it seems like there's always *something* else we could be doing. The truth is that you have to find a balance between helping to heal your child and keeping yourself sane. He's making great progress, you're doing interventions that work, I'm sure you've done your research and you know your options, what else is there to do? You could dabble with supplements, you could try your various therapy options, but if what you're doing now is working, short of developing a crazy drug habit and never sleeping again, it sounds like you're doing everything you can. And you have his progress as evidence of that, if there *was* something more to do, he wouldn't be doing so well without it.

As for your second question, that's a really tough one. We've had our diagnosis longer than you have, 3+ years now, and the most interesting thing I've found is not necessarily how much progress my son has made, but how much *my* expectations have changed. At 2.8 when we got our dx, I, too, went online and read about kids making miraculous changes; entering mainstream kindergartens at the age of 5; nobody can tell there's anything different, etc. Now, at just past 6, those things have actually been true for us. He's in a mainstream kindergarten and it's true that most people can't tell there's anything different about him, upon first glance. But he still has autism. And he still isn't like the other kids. We still have years of work to do, I can't imagine there will come a day when he doesn't need an IEP. He'll never be a ''regular'' kid, but what does that mean, anyway? I think in order for you to get answers to your questions, you need to be able to define your own expectations. What do you want him to do or not do, and if he doesn't meet your expectations, will you be okay with that?

I'm not sure if this is helpful to you or not, these are just the things that I think about on a daily basis! Feel free to contact me directly. Jill

Kids do get better. There are a couple members of my autistic boy's medical and therapy team who simply don't think he fits the diagnostic label anymore. He still has issues and he needs several doctors and therapists, but he functions fine at a school with no supports at all - they don't know he ever had a diagnosis. mom

You sound like you are doing all of the right things, exploring options and enjoying his successes. However, I've worked with children on the autistic spectrum for over 20 years. First of all, a child's long-term capacity for progress is dependent upon the severity of the disorder's impact on his/her primary areas of development (motor, intelligence, communication, social, and self-care skills). It really differs from child to child, with some learning to talk and others not, for example. Early intervention is best (2 to 7). But we are talking about progress from where his own ''baseline'' was, not becoming a ''regular kid.'' That's the tragedy of autistic spectrum disorders. I'm a mom, too. You are being a good mom in exploring the methodologies (diet changes, OT sensory programs, TEACCH workstations, picture schedules, PECs system), but be VERY wary of anything that is potentially harmful or overly expensive (shots, pills, etc). There are alot of false promises out there because, with the rise in ASD, this is where some salespeople are targeting you fragile parents. If you connect with a good OT, speech therapist, and teacher in your school district, they can explain so much to you and give you strategies for home, too. You will be better equiped to recognize and celebrate the ''baby steps'' of progress your child makes if you are not holding onto false hope for a cure. Forgive my bluntness, please. You really sound like a good mom. I just feel that too many people are steering parents in the wrong direction, only to have them end up with the same child they had before, only with much less cash in their pocket and lots of frustration. I wish you and your family the best. jl

there is a lot that can be done ranging from behavioral, nutritional, chiropractic, exercises, etc. I have a child on the spectrum who is now doing much better with school/peers because of specific interventions....the literature on what works is constantly changing..most important is to do as much as you can as soon as you can if you'd like to discuss send me an email gregory

Even ''regular'' kids need lots of care and attention, and even ''regular'' kids can go through a rough patch in their development. Because your son has had such a wonderful therapist and has made so much progress, he might actually be better off than a ''regular'' kid who did not have such a caring and devoted mother. Pro-active

Although the experts you've consulted are correct about autism being genetic, that doesn't mean it can't be treated. My parents were both obese, but by being extra careful about the number of calories I consume every day, I've managed to compensate and to maintain a healthy weight. The fact that your son has improved so much shows that you have taught him how to overcome many of his genetic disadvantages. He might end up better off than some regular kids. Luck of the Draw

You don't really provide enough information for us to answer either question! As to whether you are doing enough: if he's over 3 years old, you should be in contact with your school district to request a district assessment and start district-based services. If he's not, you should be in contact with the Regional Center where you live to have THEM assess him and suggest a set of services. Is he speech-delayed? Autism spectrum kids often are, and speech services are helpful. Does he have sensory issues, like hypersensitivity or, inversely, low sensitivity? You could start some OT for this. Any tantruming, if young? Sometimes ''play therapy'' can work. Can you afford to pay for more than you are already doing? If not, asking the question will just frustrate you!

As to your 2nd question - well, if you load on services now, you may find that the ''autism spectrum'' diagnosis was just the closest thing anyone could get to describing your kid at this age, and that as he grows he will change, improve, have fewer symptoms. Would that happen without the therapy? Will it happen if you do nothing? Who would take that risk to find out?

My now 12-year old is a hugely different kid from when he was diagnosed at 4, and is doing great. Is he typical? Heck no. Is he pretty happy and being educated well? Yep. So while I don't think you would say he's ''cured'', he's not at all the screaming, inarticulate, frustrated kid he was at 3, now that he has a lot of modalities in which to express himself! hope that helps. Provide more input, and you'll get more specific suggestions! - Been there

Hello- I just wanted to write some words of encouragement on the bio medical approach. The daughter of my best friend in Chicago also recieved the same diagnosis a few years ago. Through bio- medical/alternative therapies/supplements and changes to her diet she is now completely functioning. Now at four years old, she is doing so well that she was accepted into the gifted program in the Chicago Public Schools for next year. What you are doing can only help your son, and at least you will know you've tried everything you can. Stacy D.

At an autism conference at Children's a few years ago a parent asked whether autism can completely go away and your kid can be totally fine. The presenter replied that if that is the case there was a misdiagnosis in the first place. Don't forget that there's not 'hard' biological marker for autism right now. People will evaluate your kid and then based on what they observe they will give your kid a diagnosis. Later if your kid is observationally 'normal' it means the diagnosis wasn't the right one to begin with. It is all based on observation and not on any 'hard evidence' which means that there is a lot of misdiagnosis and revision of labels. I myself have a kid who has been 'misdiagnosed' or was it a misdiagnosis? Who knows? We have a hard to label kid so we've gotten lots of labels. I try to remind myself that this means there's a limit to professional knowledge and try to maintain a healthy skepticism. Right now, many professionals are happy to give kids an ASD diagnosis. My feeling is that if your kid seems a little funny that's one of the labels they'll get. In 50 years if we find a hard marker for autism everything could change and 'woops, sorry for all your heartache' but those kids aren't really autistic after all. Don't forget that back in the day when only kids who were non-verbal, self-stimming etc. were labeled autistic the cause of autism was believed to be a rejecting 'refrigerator' mother. The state of science will change...As for are you doing enough, I commiserate with that feeling but don't have any answers. I think it is important to focus on what your child needs and find their strengths and try to ignore the labels unless they are helpful or feel accurate to you... best wishes

Toddler With Autism- Therapy Opinions?

Oct 2007

My son was recently diagnosed with autism. CHAI was immediately offered as a therapy option by RCEB and after interviewing with them and other places we decided to go with them. Has anyone had any experience with them? Also I am looking for recommendations for support groups, playgroups( I live in Oakland), and Dr's within different specialties( a developmental optometrist to do a visual evaluation) that you have had positive experiences with. It seems like there are a lot of people out there that are going through this( 1 in 161 children, 1 in 41 males) but despite us being pretty social we don't know anyone personally that's going through this. I think it would be both helpful for us and the other people involved so that we can share information and support. I recently saw a womans post about Aspergers and the amount and sincere compassinate response she got really made me proud to be a part of this network. The BPN was on vacation when we got our diagnosis, and after spending that time advocating for our son I have looked forward to reaching out to others in our shoes. Thanks in advance and look forward to hearing from you! lily

Great website for autism resources: http://www.difflearn.com/ Chris

Dear Lily, First of all, good for you for getting right into the stream of things to do to help your child. Never having been a Regional Center client, I can't speak to the services they offer. But I would like to tell you about several other resources.

First off, when your child turns 3 you will be transitioned from RCEB to Oakland Unified. That's good news in many ways - Oakland has some great programs for kids on the spectrum. The main parent support group for Oakland parents of students with special needs is the Community Advisory Committee, or CAC for short. We meet usually on the 1st Monday of the month. Contact CAC to be put on its email list at cacoakland [at] comcast.net

Also, there is a local special needs maillist you can join. It's a Yahoo group based listserv called Special Needs Network. Search for it on Yahoo and join right up.

The schools that are not inclusion schools - the ones that are specialized schools for kids with various needs not served in a mainstream environment - all have parent groups too. So depending on your child's school placement, you may have a built-in support network.

I hope this helps, and I look forward to meeting up with you in one of the other mail forums available! - Nancy

Autism Early Intervention Centers for 2-y-o

March 2006

My 2 year old son was disagnosed with mild autism / PDD. He was referred to CHAI (Oakland CHildren Hospital Autism Intervention), but we're not sure that's the best place for him. Anyone have had experience with CHAI or BIA (used to be in Emeryville, now in Oakland) or any other early intervention centers in East Bay? Thank you!!

I have no experience with CHAI but my son currently gets services from BIA and I can tell you without a doubt that it's the best thing I've ever done for him. They are the absolute BEST. The program is comprehensive, flexible to adapt to your particular child's needs, but the best part is that I saw instant results in my son as soon as we started. I wouldn't go any other way, ever. The only problem, and they'll tell you this, themselves, is that they're incredibly expensive. Our school district is paying for them, through my son's IEP, and if it wasn't for that, we wouldn't be able to be doing it. Feel free to contact me directly if you have any questions about the specifics of our program. Jill

My son was diagnosed nearly 2 years ago, just after his 2nd birthday at Children's Hospital. I'll never forget the day. He's doing much better now, even tho some days are still hard, but it does get eaiser. I think the first year was the hardest. We were ''assigned'' to Si Se Puede Behavior Inc for in-home ABA 20 hrs per wk. Our Regional Center case manager also tried to get us hooked up with Stepping Stones, but they were full. We've been happy with SSPBI. I have a friend who has uses BIA and likes them very much. There is a great swim & gym program on thursday afternoons and friday mornings at the Berkeley YMCA for special needs kids, including those with ASD. They also have a support group for moms. There are several great support groups meeting in the Montclair/Walnut Creek area, as well as online support groups which are fantastic places to get info. Many of them are at yahoo groups. You can also get respite, child care assistance and diaper vouchers from the Regional Center. Email me if you'd like to join and I can pass your email on to the moderator of one great group for the east bay. mma

Autism home programs

August 2005

We have done a Lovass type home program for 3 years, I am a divorced mom with three little ones, my son is six with autism, now after the program he is social and verbal, it took a toll on my little girls and my finances to be able to stay home and do a 40 hour progam but I did it because alot of the public schools had inadequate programs. But at this point I am burnt out and at some point will need to find work and wondering how and when most parents stop these programs?at what age do you stop? how to transistion? does anyone know of other states like CA that have a idea of how to work with autistic children in school? I feel quilty for moving on but its very difficult. Nat

Hi Natalie, I sympathize with the financial and emotional difficulties of doing the myriad treatments for an autistic child. Personally, I have been a play therapist for three years now in a home-grown program called ''Son-Rise'', and it has been extremely effective, with the child now asking me questions about myself, becoming more interactive, etc. Not many people know about this type of program, but here is their web- site:http://www.autismtreatmentcenter.org/ it's through the Autism Treatment Center of America. Although I work with other therapists in a full-time program (run by the parents), you can customize it to be an adjunct program to a regular school, or whatever level of intensity you desire. Maybe this type of arrangement would work for you. Good luck! anon

Hi, I missed your original post, but I would like to recommend the home program my son went through. We used BIA, Behavioral Intervention Associates, and they worked with him for 20-30 hrs/wk for about a year. My son then entered a regular kindergarten class with the support of an aide. Nancy

Chelation as autism treatment

August 2005

Does anybody have any personal experience with chelation as a treatment for autism? I'd love to hear all about it. Does it work? Is it just quackery? Are there any local pediatricians we can work with who have some expertise in the area? Feel free to contact me directly. Jill

You've probably already seen this, or 10 other people will post it. But a child recently died during chelation therapy. Read about it here: http://msnbc.msn.com/id/9074208/

As of the date of the article, I don't think the child's cause of death had been officially determined, but if you're considering chelation therapy, it might be worth following up on this story. Anon

Please research this and inform yourself. A child recently died who was undergoing chelation therapy. There are no reseacrh studies that prove or disprove the effectiveness of chelation for autism. The organization that endorses chelation is not recognized by the scientific community. Do a google search. Anon

A good deal of information about chelation generally can be found at http://www.quackwatch.org/01QuackeryRelatedTopics/chelation.html and specific to autism at http://www.quackwatch.org/03HealthPromotion/immu/thimerosal.html

Granted, the man who tends this website does have a point of view -- and he pretty much thinks chelation is quackery, but at least he puts together information from reputable sources, and gives additional leads. Might at least be worth a look. Karen