Interactive Autism Network (IAN) Reports Children with Autism Receive an Average of Five Treatments at Once
Here, in order of popularity, are the top treatments:
This list makes very little sense to me. First of all, many of the "treatments" listed aren't really "treatments" at all: visual schedules are just graphic organizers - barely rising to the level of classroom accomodations.
- Speech and Language Therapy
- Occupational Therapy (OT)
- Applied Behavioral Analysis (ABA)
- Social Skills Groups
- Picture Exchange Communication System (PECS)
- Sensory Integration Therapy
- Visual Schedules
- Physical Therapy (PT)
- Social Stories
- Casein-free Diet
- Gluten-free Diet
- Weighted Blanket or Vest
- Risperdal
- Melatonin
- Probiotics
Granted that this is a self-selected group of parents who may be more informed and/or involved than the average - are well-informed parents really more likely to try special diets, supplements and pharmaceuticals than the many well-regarded developmental therapies out there, such as floortime and RDI?
Since supplements and diets are often selected based on the theory that autism is actually caused by toxins - usually believed to be from vaccinations - this trend is particularly interesting. It would suggest that parents have little faith in recent findings suggesting that genetics, and NOT vaccines, may be behind most cases of autism.
What's your opinion? Is this report just off the mark - or are parents really flocking to diets, supplements and pharmaceuticals while avoiding the intensive behavioral and developmental therapies recommended by so many physicians? If so, why?
Comments
I think ABA and other behavioral therapies are cost-prohibitive because insurance, for the most part, doesn’t cover the treatment. (Hopefully that will change since the AAP recommends it.) As I’ve mentioned before, in flyover country (the big gap between the east and west coasts) school districts rarely provided ABA. Although obtaining services can be difficult, speech and OT are often attainable … although many times in extremely limited amounts.
It’s interesting though. Maybe attitudes are shifting. Seems like every time I meet someone with a child on the spectrum, the first thing they mention is Jenny McCarthy.
I just hope that soon we can figure out the various types of autism and then figure out which treatment(s) are appropriate…
I do see your point that several of the items listed are tools, not treatments. I’m a little cloudy on why you say people are using ABA. It’s third on the list. Are you saying it should be 1st? In that case, the most likely answer is that either people are on waiting lists waiting for their children to get funding to get into ABA OR people are not understanding what ABA IS. Also, why isn’t Floortime Therapy or other methods listed?
That website is a silly waste of money, if you ask me. None of the information is useful or new for parents. It’s all information that perhaps a high school student doing a report on autism could use.
Julie, you’re absolutely right!! I completely skimmed past ABA as #3 on the list… so I edited the blog accordingly. Thanks SO MUCH for your attention to detail!
Lisa (autism guide)
I think that Speech and OT are probably the most common since they are often provided by the public school system, and I am glad to see they are high on the list. It seems that schools also often provide PECS, visual schedules, and, on some occasions, social skills groups.
I think that it’s always important to keep in mind what research says about what “methods” are effective. (I don’t particularly like calling them “treatments” either). The Association for Science in Autism Treatment is a good place to start when looking at the research for various methods. http://www.asatonline.org/resources/autismtreatments.htm
Nicole Caldwell, M.Ed. of http://www.PositivelyAutism.com
I wonder if you ever have anything good to say? You seem to get a kick out of scathing everyone and everything. In my opinion, you should be removed from being an editor on About.com
You bring down the standard of this great site. Shame on you.
I love it: if there’s one thing I’ve NEVER been lauded for, it’s attention to detail! Did you notice that I wrote “are” when I meant “aren’t?!” TeeHee!
Jennifer – I’m not quite sure I understand what your issue is? I have an entire section on this site entitled “Inspired by Autism,” which includes a great many success stories and positive articles – perhaps you haven’t seen them?
If you mean that you don’t like my blogs, well, that’s okay – that’s what the comments are for, and you can certainly express your opinion as you’ve done.
Is there a topic you’d like to see addressed that hasn’t been addressed on the site? If so, let me know – I’m always open to suggestion!
Lisa (autism guide)
I am a parent of a child on the spectrum. I can testify to many treatments on your list. As a parent who learned virtually nothing from medical doctors about autism and was rather educated about the most effective treatments for Autsim from other parents with Autistic children, I have embraced their experience. Currently we are using the GF/CF diet (which by the way usually go hand in hand and are not often seperate “treatments” as they were listed in the article), ABA therapy, OT, Speech, Social groups, Picture Schedules, PECS and supplements.
Unfortunately, I think that most people who are supposed to be Autism guru’s don’t understand the “why” behind the decisions to choose these particular treatments. For example, although it is indeed my personal conviction that vaccinations poisoned my kids- aside from the thimerosal factor (look at the other toxic ingredients in them), I chose the diet and supplements because my son was SO constipated for well over a year that he slowly began to fail to have bowel movements. He started to go from pooping every day as an infant to every other day, to every week, to every two weeks and eventually it was only once per month. After taking my child to several doctors all over the state, they kept telling me, “This is normal, he’s just afraid to poop. Lots of kids deal with this and it will all be fine.” etc….we had xrays to prove how constipated he was and still nothing was done except to tell me to go buy Miralax or Little Tummies OR to give my son two enemas a day! HELLOOOOO???? Morons! So I chose the diet after learning from a support group for autism made up of other parents that constipation and or diarrhea are actually extremely common gastrointestinal issues our kids face. Low and behold, Grapefruit seed extract, a probiotic and a gluten free casein free yeast free diet has allowed my son to start pooping EVERY DAY again!
Furthermore, ABA is an extremely worthy treatment. In the beginning I was reluctant to allow my son to go through what I percieved to be torture…and finally I bit the bullet and sent him to a school for Autism that does that therapy. It has enabled him to learn his ABC’s, count to 30, speak in full sentances, match colors and obscure shapes and problem solve. It’s an absolutely excellent treatment and its a downright shame that it is not funded as well as OT and Speech.
Speech and OT are kind of the standard treatment for most states. OT has been a great tool helping with fine motor skills and such that my son struggles with. Speech for us has been pretty much useless- not because I don’t believe in speech therapy but because our ST is very inexperienced with Autistic children and I would have to put him on another one year waiting list in order for my son to receive a different therapist. However, I think it would be a very good thing for the majority of children to receive.
Anyway, that’s my two cents. Yes, perhaps parents do know what they are talking about when it comes to kids with autism and vaccinations. Afterall, would you allow your doctor to feed your child Formaldehyde Soup at the doctors office? Probably not…but thats what we do when we allow them to put that concoction in a needle and inject it into our little babies. Sad.
Lisa Jo Rudy
Of course you don’t see where I’m coming from. You’re far too self righteous for that. I suggest you spend some time on other peoples blog’s, not just your own. You will find many sentiments spread across groups of just how poor a job you’re doing. Somebody said the other day that you like to think of yourself as the “Judge Judy” of About.com. Well Judge Judy is qualified and fair. You are not an expert by any means, quite the contrary. There isn’t another editor on About.com that’s as negative as you. And if About.com had a voting system you’d be thrown right out – justly so.
Lisa’s blog provokes thought and asks for comments what exactly is wrong with that? Surely we do not accept everything that we are told about everything. I would never just accept something was either good of would work for us without questioning it first. I do not think that Lisa is negative she is realistic about many of the issues that she opens up for debate. This is one of the most informative blogs I have found and it is not pro-anything one way of the other. Maybe that is why I like it.
You see if I had to be upset about anything to do with today’s blog it would be the fact that the piece refers to treatments. I personally do not consider autism to be an illness so why do you need treatments? Would you give someone with Downs syndrome a never ending array of treatments? I wonder how we managed without all of these treatments and yet we have and my kids have made really good progress. So that beggers the question are parents paying money for ‘treatments’ that they are told that they ‘must have’ but do not really need?
I like this blog
I am an IAN member. First, let me say that their system for data collection is cumbersome and overwhelming. As a result, only a small percentage of what we do for my daughter, “treatments,” was ever entered into the system. Further, the system is not well indexed meaning a certain methodology may be listed in many different ways (i,e, ABA, ABA/VB, ABA/VB/PBS, Applied Behalioral Analysis, Behavioral Analysis, etc.) as a result the values for any one therapy might be spread across a number of “scorecards” thereby reducing the number of votes any one therapy truly received; I would question the overall validity of their reporting.
That said, they are the first and only group attempting to gather information about what is actually working for many of our children – kudos to IAN Network for trying to understand.
Finally, as a parent, it is my responsibility to educate my child and prepare her for what life may throw at her. Technically speaking, everything I do with and for her all day could be considered “treatment.” Providing guidance during tasks, censuring her for poor behavior, applauding her when she succeeds or tries hard to succeed, encouraging her to use language to express herself, helping her to learn how to make and keep friends, getting on the floor and playing games with her; oh, wait, all of these are components of ABA and Floortime AND parenting.
Children deprived of these “treatments” will likely fail to thrive in life. So, maybe those of us who pursue “therapies” with vigor can try and accept that those who simply choose to parent are still providing a therapeutic environment for their kids. And maybe those who choose not to utilize formal therapies can try to see how a program, that yields very precise data allowing a parent to identify his child’s deficits and also lays out a clear methodology to help the child to overcome those deficits and become more able to function in the “real world,” is a valuable tool in assisting families and children with autism achieve ever higher goals.
Every parent has a different dream for his child; my dream for my daughter is that she can choose her future and then pursue it safely, joyfully, and successfully.
For the record, our peditrician insisted our DD had nothing wrong for years, then offered no guidance upon diagnosis. Thanks to many studies, books, autism families and autism support groups (internet and local), a few outstanding doctors (DAN and other)we developed the regimen our DD is currently using. Her regimen incorporates special diet, supplementation, energy balancing, and intensive ABA/VB/PBS.
The path to the current regimen boasts numerous other treatments and therapies; each had value at a point in time, each helped our DD to improve a little more, and none can be discounted as each thing she participates in becomes a part of who (and how) she is, going forward.
Much like the toxicity theory of autism (which I subscribe to), every little bit adds up; not only is the saying, “you are what you eat” very true, it can also be said, “you are what you have experienced.”
MY SON HAS BEEN GETTING EARLY INTERVENTION SINCE HE IS ONE FOR GLOBAL DELAYS. HE WAS JUST DIOGNOSED WITH AUTISM A WEEK AGO. MY SON DOES NOT HAVE ANY SPEECH AND WE USE THE (PECS) PROGRAM AS WELL AS A PICTURE SCHEDULE AND SIGN LANGUAGE. USING ALL 3 WITH HIM HAS OPENED HIS COMMUNICATION UP, HE IS NOW ABLE TO TELL ME WHAT HE WANTS AND USING THE PICTURE SCHEDULE HE KNOWS WHAT IS GOING TO HAPPEN NEXT THROUGH OUT HIS DAY. SINCE STARTING THIS MY SON’S TEMPER TANTRUMS HAVE NOT BEEN NEARLY AS BAD THEY HAS DECREASE BY HALF. MY SON GETS ABA, OT, PT AND SPEECH SEVERAL TIMES A WEEK AND IT HAS MADE A WORLD OF DIFFERNCE.
As a parent of a daughter who in less than 4 years has been continually upgraded with her ADOS diagnosis at U of Miami from Full Autism to PDD-NOS to now: “borderline, but no longer on the spectrum” maybe my 2 cents can help.
While we started out for a couple months with gov’t speech and ABA, we’ve done RDI exclusively for 3.5 years. The reason being that RDI (possibly other 3rd gen therapies too) tries to cure the core deficits of autism (ie: what makes them autistic in the first place.)
The problem with ABA (aside from massive costs, and being a 1st gen therapy from the 60s) is that the premise is that if you’re brought up to speed with your skills then the autistic part might work out for itself. If your goal is a kid that gets through school and not has a normal life, this is for you. I know 30 year olds that you don’t want your kid to be, yet they finished school just fine.
We actually turned down a lot of free government ABA and speech. Which brings me to speech therapy. Many people don’t know it, but historically the vast majority of autistics will eventually speak. So your just treating the runny nose but not the flu itself.
As far as biomedicals go, I think in California they have a nutritional cure for everything and it’s a pretty easy cop out to stop at whole foods on your way home and then tell people your curing your kid.
First let me start off by saying my comments are in no way meant to offend anyone……I believe parents choose the treatments out there out of desperation. I have an almost 9 year old son who is severely autistic. Thanks to the very on the ball pediatrician, our son’s autism was first brought to question when he was just a year old. We have been trying a molotov cocktail of “treatments” ever since.
We have tried EVERY one of the therapies, or treatments on this list and than some. He has tried both ABA and Greenspan Floortime both of which were unsuccessful and in fact, both clinics told us our son had issues other than Autism that was interfering with their therapies. Yet, when placed voluntarily out of the home twice (for observation and treatment) which was pure H_ _ _ for his father and I, but also necessary due to our sanity and our other child, the ONLY diagnosis he came home with still was only Autism. Nothing more than “simple Autism” according to the condescending psychologist. Our son has a history of extreme aggression and self abuse, is completely non-verbal, is not-toileted and has no consistant effective method of communication. He has in his short little life been through more than a dozen medication trials, most of them unsuccessful to say the least and many of them made his situation MUCH worse. He has been on diets of soy free, peanut free, gluten free, and casein free, with no success. After 7 1/2 years of working with more professionals than I can even remember, Autism experts, psychiatrists, dietitians, etc. etc….. I have learned that no one REALLY knows how to treat Autism. It is like spin the bottle and see where it lands. Maybe the treatment will work and maybe not. As for Jenny McCarthy, I have very little respect for someone to write books about “curing her child of Autism”. I have serious doubts as do many others as to if Ms. McCarthy’s son was ever truly Autistic. Thank God he is doing well though no matter what the cause. I ended up going to see a Homeopathic dr. Yes, it was out of pure desparation. Our son is getting VERY big and extremely strong. Trust me, we don’t have much time. Our home is already equipped with a saferoom and special coating on our windows….we learned from experience. If anyone tries to tell me they have all the answers, I will just smile and nod. The medical industry can’t even agree if injecting a child with the chemical Thimerisol is dangerous to a developing neurological system. For crying out loud. Why do you think they tell pregnant women not to eat fish during pregnancy? The first time in my life I ever had a flu shot (which contains mercury) I was pregnant with my son. Hmmmm…..how can parents of Autistic children help but wonder if this is a contributing factor? I believe it was a combination with my son, genetics combined with Thimerisol possibly? No one will ever know. What I do know is there really is not anyone out there that knows what will work with your child. It is trial and error and you just have to have vigilance and keep trying different things. My son is one of the brightest shining lights in my life. When he is in a good place, he is truly an amazing human being with a wonderful pure soul. We will always keep searching for that magic treatment. I pray for all the wonderfully, amazing, vigilant parents of Autistic children out there and I pray for the understanding and patience of others who don’t understand this disorder. These kids are so worth the fight!! Don’t ever let anyone beat you down.