Autism Speaks, the nation's largest autism-related non-profit, is a magnet for extremes of emotion: love, hate, frustration, jealousy, the whole gamut.
Over the past five years, Autism Speaks reached out and incorporated several well-established autism non-profits (NAAR and CAN). The founders, Bob and Suzanne Wright, had a much-publicized blowout with their daughter, Katie, over the likely cause of Katie's son's autism. The Executive Director, Alison Singer, walked out over a disagreement regarding research into vaccines and autism, and founded her own competing non-profit. Ad campaigns and videos produced by Autism Speaks have elicited both delight and horror from members of the autism community.
Whatever your feelings about Autism Speaks, there is no doubt that it has become the 500-pound gorilla of autism awareness, running major grant and research programs, massive ad campaigns, and star-studded fundraisers. Autism Speaks is also highly political in all senses of the word. Its founders, Bob and Suzanne Wright, attend United Nations events, and its staff are active in policy strategy on the state and national level. Bob, the ex-director of NBC, has friends in high places - and for years has been the force behind celebrity happenings featuring major stars like Jerry Seinfeld and Jay Leno.
Today, Bob and Suzanne Wright were making a whirlwind tour of New York, starting at the Stock Exchange to ring the opening bell and then proceeding on to flip a switch that would light the Empire State Building blue in honor of Autism Speaks' very own "Light it up Blue" awareness campaign. Between gigs, I got an opportunity to chat briefly with Bob; given such a short window of opportunity, I asked just two major questions.
Lisa : What programs, funding, opportunities and/or resources will Autism Speaks be developing to support the growing number of teens and young adults with autism as they move toward higher education, employment and independent living?
Bob:
We have largely focused on younger children and families, as we knew we couldn't take on the entire spectrum. We are now trying our best to affiliate with groups that are dealing especially with the crossover from minor to adult (ages about 19 to 21). This is a critical transition because at age 17 or 19, you lose your benefits if they're state supported. Then, just a few years later, you go from losing some benefits to losing all benefits!
We have created a few resources; we have an online transition roadmap, and over 6000 packages have been downloaded. We also offer family service grants, and many of these are going to organizations that serve young adults or adults. We would like our level of ability to support that to continue; we do about 100 such grants a year. If we can put more funds we raise into that category it'd be helpful.
We're also running events to bring people together to discuss the issue. There's a huge gap in our national social system to help us deal with transition for adults with autism. The gap is so wide, no single group can bridge it. We need to get that community together - perhaps to get medicare more involved; crystallize a program that can eventually be brought to states or congress. We formed a housing committee including experienced real estate people. We're looking for a model program to take around the country to finance the cost of housing and care for adults with autism.
We will pull together expertise from difference areas - finance, real estate planning - and we're finding people willing to take part in efforts to put together a broader plan. Essentially we're trying to facilitate the proceess by setting up meetings all around the country; we're not going to take over this effort, but we have a lot of expertise, a lot of people we can call on in lobbying and government. We also know that the people who are involved with our fundraising walks have many skills, and many organizations they're connected to. We've also been working with autistic self-advocates: Michael John Carley and GRASP are very connected to this project.
Lisa: You founded Autism Speaks, at least in part, to help your grandson Christian. How is Christian doing?
Bob:
Christian has a great number of difficulties. He'll be ten in August; he is more stable, but he still has serious attention and communication problems that prevent him from learning. He can't hold onto images or words. I don't have to be reminded of our mission when I see Christian - even with all the care he has, it's been terribly frustrating.
Perhaps readers will be comforted, and perhaps they'll be dismayed, to learn that even the Wrights - with all their money, influence, knowledge and access - still have the same struggles as some of our own children do. Certainly, though, it is good to hear that Autism Speaks is facilitating collaboration among many different organizations and professionals to address the vast and soon-to-be-overwhelming issues faced by adults with autism. I hope to learn more about how this effort is progressing; meanwhile, your comments are welcomed.
Wait, what? How the HELL would readers be comforted to know that the Wright’s have been unable to help their grandson? What kind of sick, vindictive monsters do you take us for?
Also, check out charity navigator to see who Autism Speaks is really helping. Might surprise you.
Ron, I’m not sure if you’re deliberately misunderstanding me, or not?
Obviously I’m not suggesting that we celebrate Christian’s difficulties.
Rather, I’m suggesting that parents need not feel guilty because they lack information and resources that are “out there” somewhere. With all the information and resources in the world, you can only do as much as you can – whether you’re an ordinary person or the head of Autism Speaks.
Lisa
Very true. I am not wealthy at all…probably considered lower middle class and I think sometimes people think throwing money at Autism makes a difference. I went with a intervention that is actually cheaper then most and my children are considered recovered. I think is has less to do with money and more to do with understanding what Autism is! It all comes down to education and being willing to acknowledge emerging treatments,
KAthy
Ohiomom – what is the concern you’re seeing on Charity Navigator? If it’s the high salaries, while I agree that they’re high, I’d also note that MANY heads of large non-profits make as much or more.
The head of Easter Seals makes nearly $700,000.
The head of NPR makes well over $1 million.
The head of the Susan Komen Foundation made over $400,000.
It’d be great to think that non-profits overall are filled with selfless individuals – but the reality is that big non-profits pay just as well as big corporations, and sometimes better.
I’m not saying Autism Speaks is an ideal representative of the autism community. In fact, I don’t think they are. But they do, in fact, provide grants for autism-related projects; they do, in fact, fight for insurance for families; they do, in fact, raise awareness of the disorder.
Could they do more or better? Absolutely.
Lisa
I think it may have just been poorly written (no offense) maybe it should had said comforted in knowing the Wright’s grandchild may still have the same struggles as some of our own children do. That’s what Lisa meant, anyway. And yes, it does give me comfort. What it tells me regardless if your low income and struggle to obtain services, or are stinking rich and can afford anything out there, some children are still going to struggle and for many, there is no ‘magic bullit’.
What I find interesting is how the public has great expectations of Autism Speaks. I agree, no Org really can take on the whole spectrum but it’s nice to read they are making an effort for resources.
Charity Navigator is a great site and makes it easy to obtain and compare. Now maybe people generally do assume Orgs work for free and many do. Of that site when searching other autism Orgs, they’re not found however almost all of the larger Orgs out there, it is a job.
Thanks, Sandy. I’ve changed the copy accordingly.
Lisa
Autism Speaks, like many autism advocacy groups, is torn between following best available science on one hand, and appeasing its “blame the vaccines” rank and file members on the other. AS regularly sends coded appeals to rank and file in its PSAs: “You child’s chances of becoming a professional athlete – 1 in 800,000. Your child’s chances of having autism – 1:150.” Katie Wright may be “left the building” years ago, but she still exerts a pull on the organization. The unproven notion that autism is an epidemic is like religious dogma to some parents, and AS can’t quite bring itself to challenge that idea with, you know, facts.
The MOTHER of the child, who believed her child was damaged by vaccines, has these two powerful grand parents working against her and their grandson. They would never admit to any natural path of healing working, even if it has. It’s to their benefit to suggest that Christian is not healing. So YES, I see some “meanness” here, no matter how it’s worded. Most people would not know when dumping into this huge and powerful fundraiser that they are likely working against healing their own children ,as well.
After sifting through videos and transcripts, and not having more than what’s available, it seems that the family has fought their own war and lines have softened. It’s certainly understandable, given the huge amount of funded research on a path that has historically provided nothing to answer the questions, that many involved would find fault and the splitting into factions would be the result. The Singer angle jimo seems to be dangerous toward progress. Where any one of these groups stands at this point in time is outside of my understanding. Money should be there and science should be universally looking for that environmental cause, it’s simply FACT that there is more autism, and genetics do not cause epidemics. I am relatively “new” to this, and don’t understand the “players”, and don’t understand why money should be allocated toward research “by design”. I can’t understand why the money is steered, that suggests that it’s political, and the one with the most money wins. This IS our children’s lives! Yet it appears, that the “factions” that believe, and are currently supported by the most vocal of pharm connections, in a genetic cause, are keeping the truth out of the equation of autism through huge efforts. I wonder if those that are backing them with their celebrity status and such “know” how much harm they are causing to the real effort of defining a cause and finding a cure?
bj, are you saying Bob Wright is lying about his grandson’s condition? Because he’s mean?
No. I am not saying he’s mean, and not addressing him as a person, addressing the reaction to his statement. I see around me, a certain amount of let’s say “satisfaction” among those that do not see complete wellness in treated children. Perhaps there are many positive outcomes, yet not complete cures, and these IMO shouldn’t be considered failures.
btw, ANB, without tracing background after reading the blog, as a “hit and run reader” ( not me)..the conclusion would be that they were denying the mom the right to be right. This IS due to the links that pointed toward family infighting, with nothing more recent provided. I’m a blue line clicker as are many, and sometimes ,as in this case, it can be misleading.
On a world Autism Day and Autism awareness month of April, seeking support from education and healthcare leaders to introducing some policies to implement technology in the classroom to make the intervention more cost-effective. Autism intervention can be delivered using technology to make it more intense. Technology cannot replace the human touch but can definitely deliver the supplemental intervention in the classroom and home. Shanesh theory is a newly developed theory to utilize technology in the classroom using child’s IPE. Why not to utilize this method for delivery and monitoring of the intervention in NJ? Visit http://www.Shanesh.com or send email to Nish@shanesh.com
The NAA put out a statement for autism awareness, I don’t see it on here being discussed. Was it the mention of Hepb vaccine?
pubmed..had this little paragraph ..what a wonderful idea, admit to it being a disease, and treat it…
http://www.ncbi.nlm.nih.gov/pubmed/21299356
here are a few of the interesting points within the awareness statement..from NAA..this is political right? otherwise I don’t get why information is shared from one area and not another?..pharm politics..?? maybe the truth is closing in? Heck if I know..but shouldn’t all info be available to “all”?
•Genetics alone cannot explain the rise in autism. Proper study into environmental exposures should be a top priority among our government, researchers and Interagency Autism Coordinating Committee (IACC).
•Recent studies(3), (4), (5) indicate an association between the hepatitis B vaccine and brain damage
•Certain subgroups may be more susceptible to environmental regression, including those with a family history of autoimmune disorders, premature infants, and children that are ill at the time of vaccination. Researching ways to decrease adverse vaccine reactions while increasing the safety of vaccines benefits the overall health of the general public.
In the NAA autism awareness PR I seen, they stated “A new study(6) confirms the relationship between vaccines and autism..” and then when you look at 6, it’s really no study at all and the conclusion has one too many ‘could be’ in it.
I’m really glad many looked beyond vaccines in the last few days and made autism awareness grand. It’s about so much more.
This topic though is about Autism Speaks and the interview Lisa was going to do. I’ve watched and read alot of coverage and I think it’s great that 1000 buildings in the U.S. and around the world turned blue. The Wright’s have an adorable grandson and in the end, I’m happy to see a set of grandparents so involved.
I have no idea , I’m sure the Wrights love their grandchild in the same way our parents love ours, and I have no idea ,as well, what position they are taking. I’m sickened by the propaganda I read on one site..autism science or something like that..it’s evangelical in that the words “science based” are used as “amen”..I really got a bad feel there. I don’t think it’s wonderful to collect money to combat truth, and that is my personal stand. If they continue to look “beyond” vaccines they will find little or nothing to explain the vaccine induced epidemic. Myself, I have hope, and that hope is that stem cell research may provide a cure, but that takes money, and the money that is being spent on autism is wasted in attempt to prove that a genetic illness grew exponentially without a coresponding growth in population. Plausibility level = 0
•Genetics alone cannot explain the rise in autism.
This is a common straw man argument. The rise in prevalence has many reasons.
•Recent studies indicate an association between the hepatitis B vaccine and brain damage.
And I’m sure those studies have been published in high impact journals, and replicated several times over. No? Why not?
•Certain subgroups may be more susceptible to environmental regression, including those with a family history of autoimmune disorders, premature infants, and children that are ill at the time of vaccination.
Vaccines are contraindicated for some children. That’s why it’s important for the others to follow the schedule.
I don’t honestly understand what’s meant by “genetics alone can’t explain the rise…”
it COULD mean –
The idea that there is a bona fide explosion in the number of people with autism which is caused by an evolutionary change in human DNA is absurd.
But the implications is -
We know precisely how many cases of autism could be the result of simple inheritance. AND we know how many cases of autism could be the result of idiopathic genetic mutation. We add these numbers together, and they don’t make up the number of people with autism. Thus, genetics doesn’t explain autism.
Of course, we DON’T know how many people have inherited autism-causing genes… how many have genetic mutations… how many have specific genetic disorders… or EVEN how many people have autism spectrum disorders (if we want to include adults).
All very confusing,..
While we are making things “clear”, there seems to be a misconception surrounding the word..theory…as described by scientists. This is not to be misconstrued as “a guess” with no weight as some would like us to believe.
Institute of Medicine of the National Academies
definition:
Theory only:
A reasonable mechanism can be hypothesized that is commensurate with scientific knowledge and that does not contradict known physical and biological principles, but it has not been demonstrated in whole or in part in humans or in model systems. Postulated mechanisms by which a vaccine might cause a specific adverse event but for which no coherent theory exists would not meet the criteria for this category. Thus “THEORETICAL ONLY” is not a default category, but one that requires biologically meaningful suppositions.
The weight of “theory ” should be an immediate call for further moneys to be placed in studies..this is not the case..those that are collecting the MOST money are careful to delegate funds ,using their own review board..and thus continue the lie…do I expect to find truth in the pharm supported journals of your liking ANB? no..I don’t..but please don’t tell me that refusal of supplying decent studies gives hep b vaccine or others a free pass under some “amen” …science based stamp THEORY suggests there is SCIENCE, plausible science, right there for the grabbing, it in no way suggests the case is closed, the science is in..no..and no
Let us then just be clear to any scientist, a ‘theory’ is not the same thing as ‘confirms’ or confirming anything, as of which the NAA stated. It’s very misleading.
I have yet to see such misleading info from Autism Speaks.
No, the studies they quote were confirmed, the theory is another story presented on a cbs program by a retired vaccine researcher this week. Two different issues. It was that “faction” , the one Singer took over that I had real issue with as it’s using science as a byword and making it meaningless. “Autism Speaks” is not taking a militant stand against research in the area of vaccine however it seems that “was” their position , at this time it wouldn’t be in their best interest to advertise in that direction, certainly not during a huge fund raising drive. I am very new to the politics, yet find them at odds, certainly not a cohesive group trying to define autism, find a cause and find a cure. In that, it’s a shame. Then again, I can’t find them at pure fault, the government , the pharmaceuticals, the powerful moneyed publications, are not being honest with the public. They are steering away from the most likely of causes, protecting themselves by putting laws into place, one in hope that the truth isn’t disclosed, the other pure protection from liabilities when it is.
That is wonderful ,Kathy! While I understand that treatment is not a one size fits all, I would love to know what you found to be so successful! I do wish there were more positive experiences shared as I wish more were upfront with their “journey” into this, when, how, why, in their own “mom&dad” words did their children become ill in the first place.
Hi Barbara,
I think Autism has many facets…and in one of my childs case, he had some medical issues that I also had to deal with along with Autism. My older son did not have any additional issues. For both, the intervention called RDI ( Relationship development intervention) http://www.rdiconnect.com was what pulled my children out of Autism. For my younger son I also used Enzymes for his digestion and some sensory interventions. RDI works on dynamic intelligence…
It is so true what you said, listening to parents who have helped their children is crucial. I think everyone is so busy arguing ( not everyone but you know what I mean). I used to think that today a dx would be so much more informed then when my kids were dx 9 and 12 years ago..but then agbain, there is so much more rhetoric to deal with!! PLain and simply, I knew my kids lacked theory of mind, and no amount of skill training was going to help them understand how to borrow perspective and learn to think! This is what RDI does and it is unique in its approach. I did make a blog trying to help explain RDI http://whatisrdi.blogspot.com/p/why-this-blog.html
I also became an RDI consultant because I saw what it did for my own children! RDI costs about 5000.00 a year…and for that money you are given a precise method to restore your childs developmental track. I had my school district pay for it so that is possible! I am very passionate about teaching are kids how to think compared to just teaching them skills!!!
Kathy
One additional point, our kids have different reasons why their neurology was effected….so whether is was vaccine induced or genetics ( I believe it can be both) in all cases the child has to have their theory of mind restored!! It is common to hear that children can talk…but we want them talking with real recipricol emotion sharing communication. Our kids did not have the benefit of thousands of hours of practice like NT infants have… gotta restore those developmental pathway and yes address medical issues if they are present too! My younger son I did some bio med with RDI because of his gastro issues!
Kathy
Autism Speak’s position was probably always the same, but misrepresented. Back in 2007, (2 years after they started) Autism Speaks made their position very clear. I think it’s unfair to claim politics has anything to do with their choice of what to research or promote. Any Org has the right to support and promote what they believe in, but that doesn’t mean I as a parent has to also support their belief’s. That’s my right.
I agree of any organization that donating to them very rarely makes a seen difference. When people donate to Feed The Children, you never actually see less starving kids. Most times such organizations that take donations, it can take years if ever for some thing huge to come of it. I doubt donating to Feed The Children will ever result in a starving-free world.
It still makes me wonder why Autism Speaks of all orgs is held at such a high standard and expectations. It seems they are impressive to many, even those same people don’t support them.
I’m glad Bob Wright took the time during such a busy time to answer the questions he did.
I don’t think many have it clear, they expect and, even those that offer their celebrity, believe it’s (the money) going toward defeating autism , a kind of “find a cure foundation” , when in fact that doesn’t really look to be the case. Then again, maybe I misinterpret “?We will pull together expertise from difference areas – finance, real estate planning – and we’re finding people willing to take part in efforts to put together a broader plan. ” That seems to suggest jmo, autism has defeated us, we can’t fix it, forget the science, let’s house these kids in the condition they’re in. They’re coming at us in droves, we need to provide for them..and that’s not a bad thing, but it doesn’t involve attempts to cut the epidemic short.
Like I said, people support groups the believe in. I would support an org that has a broader plan for those who will always have autism no matter the science, and there will be those that do have that kind of autism. Those orgs of course aren’t suggesting not to find other things, but specifying their goal of their org, and all the more power to them.
I would like to suggest the focus not just being of Autism Speaks. There’s plenty more out there to get an interview with, like AoA and GR.
I just read that Autism Speak’s “teamed up with MightyBookJR.com to help bring the entire library of 900 animated online children’s books to our community absolutely FREE of charge for the rest of 2011!!!” JMO I think that’s a great thing to do.
Of RDI, what of it costs $5000 a year? I’ve never yet heard of medical insurance paying for it, either. We’ve been doing RDI for 8-9 years and I’ve never come near that dollar amount. The cost was the price of a book and connecting with other parents and a man who does it for a living, he gives free advice to parents on an online setting. He’s commented here before. RDI years ago started out having seminars but like anything else, it evolved to having consultants which increases the original idea of how extremely cost-effective it was to parents and eliminating yet another therapist to family life.
“5000.00 a year…and for that money you are given a precise method to restore your childs developmental track”
RDI is very useful to many but again, how any can make such a statement about ‘restore’ is beyond me. My son has done extremely well with RDI however there is no ‘magic bullit’ with RDI, either.
Are you sure it is RDI. RDI is an online system with videos and weekly feedback on the videos, etc…it sonds like this person claims to do RDI…without actually having the information behind him. Doing RDI from the books is how I started but I soon needed the feedback of each objective going thru the stages…and that meant I was on the Learning system with webinars etc. I did RDI with my kids 8 years ago and the learning system has been since 5 years ago. My issue was it helped but I was only making small amounts of progress…once I did the program, the full program then my kids sky rocketed wth improvement. Is this man saying he is a consultant that is trained in RDI?
Yes depending on which state you live in, RDI can be covered by insurance.
Kathy
I’m pretty sure I know what RDI is. The person I know who does RDI is a psych and is very active in the community of RDI and has written many helpful articles about it but your opinion is besides the point and you’re in no position to question someone else.
I’m more interested in your claim of “and for that money you are given a precise method to restore your childs developmental track”.
And when it’s said that depending on what state you live RDI can be covered means then you’re referring to State medical, since private insurance really has no bearing on the state you live.
Sandy,
Well for someone active in the RDI community they are not following prodical from what you describe. There is a list of consultants on the rdi website, I encourage you to check to make sure this persons name is on there…hense you are duped into thinking you are doing something that you are not
The fact that you do not know what the method is from the learning system which EVERY family gets who does ACTUAL RDI is concerning to me regarding you being told one thing from this person and not being factual. With my own children, I have access to a complete website that takes me step by step through each milestone and objective.
Yes Im referring to a state medical or if an RDI consultant has a dual role she can fund RDI through her license as one of the things he or she uses. At this point RDI is not licensed, just certified.
Here is the website to check credentials-
http://www.rdiconnect.com Please do this as it upsets me to think of possible misrepresentation….and as a consultant who went through 2 years of training for a certificate it certainly is my business to protect families from someone who is saying they are doing RDI if they are not credentialed to do so!
thanks!
Kathy
Thanks Kathy, for your explanation, it sounds like it was the magic bullet for your children. That’s just it, we all need to find something that works well, and sharing experiences “could” help us to choose something that may be a fit for our kids. Never would I think anything is a fit for all, but I’ve always hoped that the brain could heal itself given the right “rewiring skills”. The younger the better, of course. We see children losing half their brains through surgery to stop uncontrollable seizures, and those very young children can rewire the other half to live pretty normally. It does seem that re-wiring is possible, yet the underlying issues, and here’s where the argument may be, imo, need fixing. If it’s gi, chemicals interfering with mitochondria, inflammation, or something else, I think it needs to be addressed. With an ongoing physical illness it’s going to be more difficult to “fix” the brain. As example with your one child you addressed his physical problems. I read that in the case of some rubella induced autism, the clearing of the virus laid groundwork for complete recovery. This is why I “shout” so much about finding the causes, only because I hope that if we can make their bodies well first, the rest may be fixable. Thanks again for sharing your story.
Hi barbara!
absolutely medical issues need to be addressed. Bio med was just as important for my son to be able to make progress with RDI! RDI is not really a magic bullet..it is work but equally rewarding! One thing I did find sort of magical in case you never heard of it was SPEAK. It is fish oil and vitamin E and K…. I saw huge strides with it when we started!!
Kathy
Again, you’re in no position to question someone else nor did I even question your qualifications. That was not the point. The point I had of consultants only was that at first there was only seminars at the price of $200 which then evolved to consultants and that $5000 price tag.
Are you also then suggesting all those sites out there that are parent based and the helpful video’s they created are useless and a misrepresentation of RDI? Are you also suggesting that the books I bought by Steven E. Gutstein is useless without a consultant, even though it was published before there ever was consultants?
Are you avoiding my question? If you don’t want to answer, just say so. Can you please explain your statement of “and for that money you are given a precise method to restore your childs developmental track”.
No need to get angry!
As I understand it, Dr. Gutstein decided that the original books he put out were sending parents in the wrong direction – thinking that just playing a few interactive games would make all the difference. So he changed direction.
I’m also quite sure that Dr. Gutstein, along with everyone else, could see that there is serious money to be made in the autism treatment business. So he has carefully patented his approach, trained his own consultants, and created a program that is hard to replicate and quite expensive to provide.
What Gutstein has done, IMO, is turn a fairly straightforward play-and-coaching based technique into a highly structured business. You can buy into the whole enchilada, with all of its goals, objectives, consultants and evaluations, or just try some of the techniques. RDI folks will tell you that the former is much more effective than the latter – and of course it probably is, since it’s more systematic and consistent.
Kathy, you are both an RDI mom and a consultant, so of course you have your own perspective on the treatment. So far as I have ever learned or heard, there’s nothing wrong and everything right with RDI – but it IS Dr. Gutstein’s patented therapy, and in the long run the money does go back to the Gutsteins!
Lisa
Sandy, I would absolutely recommend that you question my qualifications! If I am telling you Im doing something I better be qualified to do just that. If a doctor is claiming to be a doctor yet did not go to medical school, it is a problem. And yes others have the right to call to question qualifications. I simply encouraged you to check it out on the website…and if the person is not certified do not say you have been doing RDI, because you hnave not. You can say you have been doing you own ecletic approach for sure…just call it what it is.
The seminars are to introduce you to the program..but the actual program involves weekly feedback, videoing, guidance, etc. Consultants are simply guiding the family… if you look at any developmental program there needs to be guidance so that it continues to work and the child progresses thru the stages.
The difference between sites that are showing therapies or RDI therapy is they are saying that they are parents doing RDI..not certified in teaching it. It is a conflict if someone is misrepresenting truth and saying they are delivery a service to a family when they are not qualified to do so. There is a difference between demonstration and claiming you are something that you arent. As far as the books, there were always consultants. I used the books too…but they only take you so far. I personally needed someone looking at what I was doing ( we always THINK we are doing something and that trained set ofg eyes is what RDI is about to guide those interactions to create the most mindfulness. Using the books have limted value. Definitely a great start to understanding what RDI wants to accomplsh but many people tend to look at those activities as the task to teach and not the mindfulness to accomplish.
I thought I did answer your question..but I will try again. A parent has access to the learning system and their consultant to go through each milestones and developmental staage step by step… a parent and consultant speak weekly if not more and they are both hard work creating in the child dynamic intelligence. If you would like to learn more about your question I have two blogs you can takje a look at if you want-
http://whatisrdi.blogspot.com/p/why-this-blog.html
http://autismremediationforourchildren.blogspot.com/
Kathy
Not sure if you think I am angry or if that comment was for someone else. I think, or at least I would hope we can come here and discuss without accusing people of being angry etc. I am not angry, just voicing opinions.
Quite expensive to provide? RDI? RDI is the cheapest therapy that is considered emerging in the National AUtism Report…so I am not sure why you would consider RDI expensive. I was spending in the beggining years ago 40,000. plus on therapy so 5000 was a god send!
I will say that many consultants were parents first and were so blessed with the therapy that we wanted to pay it forward and help other families. The professionals who also love RDI Im sure wanted to help families…. so yes I do occasionally hear that people are mad that gutstein patented the program. I understand what you are saying and I see that it could appear that way, but knowing the people I know in RDI and knowing Gutstein, he has a heart of gold towards kids on the spectrum as does Dr Sheely. I personally know them both obviously and I think I would encourage you to give them the benefit of the doubt. Noone is getting rich from RDI…and I know that for many that I know and myself included, OT, SLP ABA, etc etc all charge over 100 dollars an hour for services… I guess I just dont get why you would say that a professional doing RDI does not deserve to be paid for their work. Noone is getting rich. ok Im not haha I do presentations and will be doing one for a college …and people will say how much do I charge and Im like, nothing! I know the hopelessness I felt as a parent and I know I want to help!
Kathy
Absolutely, if you compare the cost of RDI as a primary therapy and ABA as a primary therapy, and you plan to pay for one or the other out of pocket, the cost of RDI is much lower. I also, very personally, prefer the RDI philosophy to the ABA philosophy, and if I were choosing one over the other with no other considerations, I’d choose RDI (in fact I chose Floortime, but didn’t know about RDI which was in its infancy at that time).
But there are other issues to consider. For example -
ABA is provided entirely by a therapist who works 1:1 with the child. RDI is provided mainly by a parent who receives consulting advice and support from a therapist. The therapist works with the family just a few hours a week, not 8 hours a day.
ABA has been around for a long time, is offered by a wide range of organizations, is taught through accredited higher education programs, and has been studied by many different people in a wide range of settings. RDI was developed by one person and his associates, and research into its efficacy so far is limited. In addition, the only way to be credentialed in RDI is through the Gutstein organization.
ABA is often offered free of charge through public schools. RDI is very rarely offered in public schools.
ABA is appropriate for a wide range of settings, from home and school to employment and the community. It can be used with kids, adults, etc. RDI is family-centered, and is not really appropriate for adults or in a vocational setting.
Anyway, just some food for thought.
Lisa
Hi Lisa,
My sons school paid for RDI and I have families that their school district has paid for RDI.
ABA teaches skills and RDI teaches theory of mind, dynamic intelligence. How is that not appropriate for adults. My children will now live independently because of RDI..and get a job where they can problem solve.
It took Loovas 23 years to pubish his first study in 1983…and there are no long term studies. ABA improves skills for children, but we know that our kids can do so much more then just skills. We want them to not just talk and script but to emotionally communicate with us.
ABA has been around for a long time and is based on behaviorism. RDI is based on cognitive developmentalism. Looking those both up tells you that we as a society just have catching up to do and each intervention has a purpose. ABA is to reinforce skills and trying to compensate for a child to act a certain way, and RDI is to promote mindfulness and perspective taking…borrowing perspectives and understanding theory. One man was behind the rise of ABA for Autism, and Greenspan and Gutstein both took the developmental route. As far as being offered by many organizations…I think ABA saw how that effected the programs and tightened the grasp by inventing BCBA board.
It is interesting to see how it all unfolds and I was fascinated with reading the history of both ABA and cognitive interventions….it really helped me know what I wanted with my own family.
For me, It was extremely important for my children to have theory of mind and not just behave …because it has my experience that children who only understand the world behaviorially do not know how to function in a world that is totally based on relationships. And yeah Im sure we agree and I do know that ABA has been around longer…because behaviorism came before developmentism in the last decade Its just a matter of science catching up
Kathy
No offense, I am not asking in order to be a customer.
It’s only a misrepresentation if someone is exchanging funds or claims to be a consultant. So of course it’s way out of line to accuse anyone of this. Anyone can do ABA or RDI and in fact, those fundamental ideals is what parents are generally doing anyway, all day long. If the parent doesn’t follow through, there is no point of any therapy, is there? The only difference is, is the misrepresentation of the use of ‘restore’ given by a paid consultant. You also made the claim that RDI “is what pulled my children out of Autism”. This may be true but as an RDI consultant, this is the first time I have ever read such a thing and no, you did not answer the question directly. So I wont ask it again however I have really yet to see this on the actual RDI site. It’s clear you’re offering some sort of ‘restoration and pulled out of autism’ and no offense, it sounds like a sales pitch.
Finally, anyone can see what the process is, the time it takes and the cost and in the long run the money does go back to the Gutsteins. http://www.rdiconnect.com/pages/ctp-who-is-it-for.aspx is an interesting read.
I have seen great results with the use of RDI and I have one great child, who still has autism. I am sadden to see RDI become so commercialized and certainly saddened by the yearly cost. The bottom line still is the parents, and how much they plan to be that active role in RDI and no once a week meeting will change that child if the parent isn’t doing the work.
Sandy,
So…someone can go around as a doctor and give advice and say they are a doctor and it is no big deal because they are not charging for it? Business ethics says claiming to be something you are not is wrong…
ALso please do not mis represent what I am saying either. I did not say parents do RDI once a week..it is daily, but as a consultant and a parent, I know first hand the immense benefit from having the consultant and being a consultant for a family…when at the end of the week they submit all they did with the child and we celebrate their success and get to work on the obstacles. It is a continuous program that is intense. I am very happy that you have succeeded inplementing some RDI principles! Like I said, I was there too and there was a point that progress stalled because I needed to step it up.
If someone claimed to be certified in ABA you bet they would also get inalot of trouble. Behavior mod has been around for a long time but ABA is more precise then simple behavior mod. RDI is very intruistic for some parents… but that is only 1 small part of the program. Once I really understood the concepts I still needed to know the developmental milestones to work on, etc. You can certainly do what you want, but you are not doing the RDI program. You are merely incorporating some strategies into what you are doing with your child. That is fine, just dont misrepresent.
Of course if the parent does not follow through it wont work. I am not misrepresenting anything by saying restore…and I have answered the question, you just dont like the answer. SOrry about that but there is really nothing I can do but agree to disagree.
You can certainly take it as a sales pitch, but that is exactly what I see with my own children and the children I work with and the friends I have. It works…and I dont need a sales pitch. If a parent becomes informed and sees that it is a good fit, they call whoever they want to call in their state or outside their state. There are no info mmercials for RDI and this certainly is not one haha… Im all about being educated on all sides and making an informed decision. You are stating that you are dong RDI yet you kinow nothing about the learning system….which is the center of the program and its success.
Kathy
So the link is telling professionals about RDI…Gutstein, having the same fire for our kids, want to help as many as possible and their families. What exactly is the problem in your eyes with the page? As a consultant I dont give Money to Gutstein… I dont get what your issue is that every single education model uses.
Kathy
What I said was “The bottom line still is the parents, and how much they plan to be that active role in RDI and no once a week meeting will change that child if the parent isn’t doing the work.” The once a week was the consultant, not the actual RDI. That is your misunderstanding, not me misrepresenting anything.
The cost to become a consultant, maybe they’re not but the Gutstein’s are certainly making money.
I was never talking about anyone claiming to be what they were not. We’re talking the early days of RDI when all there was Was seminars and books. So you see, it has nothing to do with ethics.
I have yet to claim what you do or don’t know but I take offense at much of this, and you state “You are stating that you are dong RDI yet you kinow nothing about the learning system….which is the center of the program and its success”
And you have the right to make that statement?? This is not discuss without accusing.
Thanks Lisa. I’m bringing my focus back to the Wright’s.
Right training is making Gutstein rich..never mind that he wants to provide families with options with consultants in every state, etc. I guess medical schools, and every school for that matter just wants to get rich. I would hope that we can concetrate on a common goal of helping families without going around accusing people doing so of trying to get rich.
yes I have the right to make the statement. People who are implementing RDI have the benefit of the complete program on the learning system and you said you were doing RDI but you are not. This is an issue because obviously from your limited understanding of the complete program you can give false information to people who want to know about RDI. This is harmful to the integrity of any program, RDI included.
What is interesting to me is I was asked about RDI, and this conversation started. What I see in the past few years that I have not seen when my children were younger was the divide and argumentative spirit back and forth…very relevent to the topic of the wrights.
RDI changed my childrens life and obviously my families life. I could not be bothered with conspiracy theories of man etc…I had to get busy helping my children.
Kathy
Right after this- of the RDI consultants, the profit off of that was simply $1,183,000 Gutstein’s made off of people becoming consultants, and people are becoming consultants every day so the profit doesn’t end. It may be the same for ABA but to say no one is making money is false.
I was in training and I had a supervisor who was with me for 18 months and supervised me with my families.. so half of that money went to her…and consultants train other consultants too.. see, here is the thing, like all other professions that are into helping people, people also need to get paid to work. If I was a millionaire I would certainly do RDI for free…but I would still do it because i believe in it. I left my other field that I could make more money…and my story is not unique because we rather make less money and make a difference in a childs life. Stop acting like everyones intentions are negative… there is a balance.
Dr G and Dr S live do not live in a extravagant house in Houston for heavens sake…. please stop accusing people and give them the benfit of the doubt. Training takes alot of manpower and like any profession, people do need to be paid. Im sure my doctor loves me but he also wants a paycheck comparable to his profession and knowledge. I just dont get this argument. You are mad that Gutstein charges people to become consultants even though there is a process of overseeing the process to protect RDI…so that people know what they are doing if they claim they are consultants. The next time you go in a plane you should feel safe to know that someone has made sure the pilot knows what he is doing and it probably cost some money to do it…we would all love to travel in a plane for free…but there are costs involved for safety and knowledge.
KAthy
And that’s only in the USA, and not counting the 17 other countries, not to mention the books and DVD’s sold which of course you don’t see in ABA.
Alrighty Sandy, obviously you will continue in your mindset.
Im moving on…..
Kathy