Autism Scams... A Warning To All Families...
I encourage all families to take the time to read this ENTIRE section very, very carefully... it goes beyond just "your everyday scam artist"...
There are many out there who would very much take advantage of families trying desperately to help loved ones who have autism, or any other illness for that matter. The simple fact is that disorders such as autism have become a very big "big bucks" business... not only in products but in seminars, etc. that often offer very little practical, usable information for families.
My sister-in-law who has a boy diagnosed with PDD (Pervasive Developmental Disorder - on the autism spectrum), recalled for me how she once went to a seminar when she first learned her son had autism and remembered that after having paid not only for the seminar but for travel/hotel/food, etc. as well, she walked out of there thinking "all they gave me are theories... and basically nothing I could use or apply with my child".
Perhaps worse than seminars such as these, however, are scams that would appear to be there "for autism" when truly, they are not and the true intent of the person running the website or offering a product or service has really nothing to do with autism at all. For example, in doing my research, I've come across what I consider some of the lowest of the low... websites that try to put "autism" as "part of their purpose" but when you "dig deeper", you see there is really nothing there about autism and that the website is really there to push a product or line of products and may ask you for a "small initial investment" or "amount of training" (which you of course pay for), or "phone consultation" (many peddlers make money using expensive numbers that you have to dial and pay for - at very high rates I may add and so... the phone call is actually part of their money making scheme... much like phone lines providing "adult content" make money in this manner). Other schemes I've seen involve "pyramid schemes" where you are expected to "sell products" but you "make money" when you "sign on other people" because they are then forced to "buy the startup product line"... and so, these companies make money not from actually selling "their products to the public" but rather from "selling the product to persons who have been conned into the dream that this is a lucrative business to get into". You see, if I can convince 1,000 people to "sign someone up" and force those people to buy the "startup products", for a few hundred, I could easily make several hundred thousand dollars without having sold any products to the "general public" or persons who were not "part of the supposed wealth building program".
Parents - if you have a child with autism - be careful... there are just so many sharks out there... and autism brings with it many expenses... I urge you not to fall prey to such schemes... you don't need to be trying to "start a home business" through schemes such as these if you have a child with autism... that child will require all of your spare time. You can do a great deal to help recover your child, but it takes time... and money... and you won't be nearly as effective if you waste your precious time and money on scams.
I would also caution you to truly do your homework. Don't just go with what other people say... I guess the best example of this is probably having to do with ABA or chelation therapy. You can spend several tens of thousands of dollars there too... yet, there are certainly parents who have spent money and seen little improvement in their children and they now are involved in lawsuits those who again "made it look so appealing". I'm not saying chelation and ABA are not helpful. Many parents swear by these... but many others do not and see the potentially huge problems within chelation and ABA also. I guess I would put myself in that group as well.
I have never tried chelation per se... I have gone back and forth on this one so many times... because I know that there is certainly a camp out there that argues it can do more harm than good... but, then again... yes, there are those parents who swear it has helped their children... and they certainly can not be dismissed either. This is truly one with which I have struggled... I've seen too much on both sides of the argument... and I think the issue I suffer with so greatly is that I find too many are focusing only on mercury (in vaccines and those "silver dental fillings" which are actually 50% mercury) as the issue... but there is much more that fits into autism... like aluminum (found in many food products and packaging of foods that allow for "leaching of aluminum" into the foods), iron (i.e., prenatal vitamins, fortified baby foods, water, etc.) and cadmium (which I suspect may be from prenatal vitamins or from plastic products used for children such as bottles, etc... just a hunch and something I am still very much investigating at this time).
Can chelation help? Yes... many argue that removing metals such as mercury has done wonders for their children. Can it cause damage to major organs if not done properly... YES.. and that is the part that truly scares me... and what has kept me from doing chelation - once again - I just don't have that confidence that we necessarily know enough about this procedure... and so... until I stop seeing progress in my son... this is still on the "back burner" for me. There are many who argue that the sooner chelation is done... the better... my son will be 8 this year (2005) and so I just don't know if I would see those "great strides" others have seen in their much younger children... and hence, this is yet another reason I have decided, personally, to put this off.
But, the issue I want to raise as far as chelation is that this too has become BIG BUSINESS... so, get informed before you undertake chelation... see what other parents are saying and which "protocols" they have chosen to follow and why. Costs can vary GREATLY... but "more expensive" does not necessarily mean the procedure is "better"... so... again... get informed...
Parents who want more information from other parents on this issue are encouraged to join a message discussion group such as provided at the Yahoo Groups message board on this issue of autism, mercury, and chelation... here's the link if you want to join into those discussions if you are considering this option... this group now has over 5,000 members... and so, there is a lot of experience from other parents here for those looking to learn more... there are also doctors, nurses, PhDs in chemistry, biologists, educators, lawyers and most important of all... PARENTS... on this board... it is one I followed for quite some time and one of the most informative out there...
As far as ABA... again... do your homework... I had the privilege of being a stay-at-home mom just when I needed to be able to be there for my son... and so, everything we've done, we did by ourselves as a family, without having to pay for expensive programs... programs with which I now have HUGE issues with anyway given what I have now come to understand about so many issues in autism (i.e., issues of "face blindness" and the absurdity of "look at me" programs that would attempt to force eye contact in these kids, programs that involve "teaching pretend play"... huge issues there too as I feel such teaching of "pretend play" could very much contribute to a child losing his/her grasp with reality (read book 3 for more on that one)... programs that... in my opinion... attempt to "fix the issues" before having a basic and deeper (i.e. not surface only) understanding of the underlying issues... again... for a whole lot more on that... read book 3 posted in full on this website and the paper on Redefining The Role Of Insulin (major issues there for metal detoxification).
Other huge issues I personally see with ABA programs also have to do with "Therapist Qualifications" and the total disregard these programs have for addressing the underlying issues such as metal toxicity and, as such, I see these more as a "band-aid" approach than approaches that truly get to the underlying issues. I just don't think we can ignore the neurological/biological/ gastrointestinal/dietary issues that are so clearly documented in these children... and this, in my opinion, is one of the GREAT shortcomings of ABA because it is absolutely known that diet and/or allergies (i.e., preservatives, food colorings, refined sugars, lack of proper vitamins/minerals, allergies to wheat/gluten, milk, etc.) can have a huge negative impact on behavior and/or ability to learn (refer to: http://pages.prodigy.net/unohu/arousal_allergies.htm). This is just one of the thousands of links on this issue... Note that vaccine components (i.e., peanut oil, etc.) can cause allergies reactions later in life according to secret CDC/FDA/Pharmaceutical industry transcripts on the role of aluminum in vaccines.
It is certainly because of all of these issues that I have many, many reservations about ABA programs and see these as often "part of the problem" as opposed to "part of the solution"....
These programs can be very, very expensive... and yet, if the underlying issues were addressed, perhaps ABA training itself would run much more smoothly and make much greater strides... but, "therapy" isn't always about "the children"... unfortunately, it is often about "job creation programs" for adults (make no mistake about that one... this is "big bucks business") and the need for the government to show "it is doing something to help parents" even if that "something" falls very, very, very short in so many areas! Parents don't need "band-aids"... they need much better solutions than what is currently being provided... until ABA therapists understand "the issues"... I fear their approach will be lacking in many, many respects. You can't address the issues, unless you first understand the issues...and too many who provide ABA simply do not have even a basic understanding of the underlying issues when it comes to autism!
So.. parents... beware!!! The scams are many... and they are often disguised and provided as part of "government programs" or "well known" programs at "big" or "reputable institutions" (marketing does wonders... no doubt about that!) Yet, parents need to make sure "the whole child is being addressed"... and you have to first be at least aware of the issues and have a basic understanding the underlying deeper issues before you can address them... or else... you may find yourself... like so many others... spinning your wheels... when time is so very much of the essence in helping these children).
What I have said here, applies not only to autism but obviously to other illnesses such as schizophrenia, Alzheimer's, Down Syndrome, anemia (which is probably more likely IRON OVERLOAD) and diabetes... all disorders that are without a doubt... part of the "autism puzzle". For more on that issue, again, read the paper entitled Redefining The Role Of Insulin and Breaking The Code: Putting Pieces In Place! (Book 3 - posted in full on this website) - both are a "must read" for anyone struggling with these issues and wanting to have a deeper understanding of what is going on!.
All 4 books I have written are posted in full on this website... parents struggling with autism and Down Syndrome also have my permission to use - for free - anything I personally provide on this website in terms of Teaching Tools, etc. You really need to read at least book 3 to understand why these tools are the way they are... for those struggling with language production issues, Book 4, Breaking The Code To Language And Communication: The Ultimate Puzzle For A Child With Autism! is also provided in full on this website and will help you understand a whole lot of stuff I personally think "the experts" have missed by a long shot (and that is putting it mildly!). If you are struggling with language development issues, make sure you read the information on face blindness. This is difficult reading... in the sense that it can be so heartbreaking... but, it is clearly an issue for those on the autism spectrum. Personally, I believe the human brain to be absolutely amazing in its ability to overcome issues such as this... and I very much suspect that in young children especially, that neural connectivity can be rebuild to help with these issues, but there can be no doubt that some of these children may indeed suffer from "face blindness" given the author who posted an entire book on this issue on the Internet stated he knew of many with Aspergers (on the autism spectrum) that suffered from "face blindness". So, if those who are verbal and on the "high functioning end" of the autism spectrum often appear to suffer from "face blindness", I think it would be a pretty good guess that those who are on the "lower end" in terms of functioning and those who are "non-verbal" and do "sideways glances" may also suffer from this to some degree as well. Again, please take the time to read this very critical information - most therapists are completely clueless as to issues of Face Blindness in autism! I am not saying that all children with autism suffer from face blindness... but I am saying that there is no doubt in my mind that for some, it is absolutely an issue! If you are struggling with language, also make sure you read the updated section on Pronoun Confusion (huge issue for not only language development but also as it relates to concept of self, sense of others, etc. - and again, an issue that is "acknowledge" in that we know kids with autism "reverse pronouns" but an issue that is hugely missed in terms of its implications - again... we see "the surface" and fail to see the much deeper underlying issues in this one too!).
Remember... understanding the issues is the first step in addressing them... it is only then that you can formulate your teaching to best address the issues you face and most take advantage of your child's strengths. :o)
In closing... parents... be careful of the scams... they can cost you dearly in very precious time and also in money... there is help out there... and it doesn't always have to cost you a fortune...