Autism Street

Note: The following is an excerpted page from www.coping.org. It is reproduced here with permission from Dr. and Dr. Messina (who happen to have a “feel free to use it completely, we really mean what we say in our blanket permission” reprint policy). I haven’t looked around the rest of their website yet, but thought this page was interesting. I think this might be difficult to come to terms with for anyone who might actually be in such a situation, so perhaps this post is more for grandparents’ and family friends’ potential enlightenment/awareness.

Exploitation: Beware Of The Parent’s Trap

What is exploitation?

Exploitation is the taking advantage of parents who are vulnerable and willing to do whatever it takes to “cure” their children who have developmental delays or special needs.

What makes parents of children with developmental disorders vulnerable to being exploited?

When parents are in shock and denial about their child’s disorder and delays, they can lapse into magical and fantasy thinking and seek a “cure” or “silver bullet” to make their children “normal.” This makes them very vulnerable to offers of help from professionals who “claim” to have the “magical touch,” or “miracle cure” to help make their children “better”, “cured,” or “healed.” These parents are unfortunately often willing to “pay whatever it takes” to get the “magical cure” to make all things right for their children.

What do vulnerable parents look like?

Vulnerable parents engage in a number of similar activities:

“Spend Whatever it Takes” - willingness to spend whatever it takes to get the “best” treatments, doctors, therapists, programs, schools etc to “fix” or “cure” their child

“Doctor Shopping” - looking for just the right doctor, therapist, teacher, program which will make things better for their child

“Blaming the Doctor” - and fighting with the child’s treating professionals because the child is not progressing at the rate which the parents had hoped the child would progress given the “hope and promises” provided by the professional or program

“Doctor Buying” - offering professionals, with “good reputations,” sums of money, goods, services etc which will entice the professional to get involved with their child

“Shooting the Doctor” - which is walking away from the “messenger bearing” professionals who give the “bad news” concerning the developmental disorder because it is “too much” to emotionally absorb and seeking out professionals who will have more “positive” or “optimistic news” to give them about their child

“Guilt Induced Hyper-activity” - getting so absorbed in the “treatment” of their child that they have little or no personal time, for fear that their child will not progress or regress if they do not dedicate themselves 150% to the curing and healing of their child.

What does exploitation look like?

Parents who are being exploited often experience one or more of the following behaviors from the professionals who are treating their children:

“Dual Relationship with Parents” - Professionals are in many states legally and in all cases ethically not supposed to personally benefit financially or business wise from involvement with the parents of children who are or have been under their professional care. A sample state statute for Licensed Psychologists in Florida states: 64B19-17.002(y) [Exercising influence on the patient or client for the purpose of financial gain of the licensee or a third party. The penalty shall be suspension or revocation and a fine of $5,000 to $10,000. See link.] This involves:

• Parents giving money, over and above the professional fees being charged to provide the services to the child, directly to the professional or indirectly by paying a third party associate of the professional. This third party could either be related to or involved in a business dealings with the professional.
• Parents lending money to the professional or a professional’s associate
• Parents entering into a business relationship or partnership with a professional or a professional’s associate, such as buying a house or car from the professional, opening a new company or business with the professional
• Parents giving professional services to the professional or the professional’s associate over and above the normal and customary fees
• Parents providing a forum by which the professional or the professional’s associate can benefit in professional, social, reputation and community stature

“The Golden Bullet Promises” - This means that the professional presents parents with false, deceptive, or misleading advertising and promises that their specialized treatment is the “Key” to a cure for their children. In many states this is illegal and in all cases it is unethical. A sample state statute for Licensed Psychologists in Florida states: 64B19-17.002(d) [False, deceptive, or misleading advertising or obtaining a fee or other thing of value upon the licensee’s representation that beneficial results from any treatment will be guaranteed. The penalty shall be a public reprimand, an administrative fine of $1,000 to $10,000, and probation with terms and conditions set by the Board. See link.]

“Inordinate Lifestyle Change” - This means that parents making radical changes in their current family life so that child can receive the services of the professional. This involves:

• Family being uprooted and moved into a new community in which the “desired” professional or program is located
• Family taking on second mortgages or taking loans out so as to afford the services of the “desired” professional or program
• Both parents going back to work to afford to pay for the services of “desired” professional or program
• Family completely disrupting their normal family cycle or routine to meet the inordinate number of hours of intervention dictated by the “desired” professional or program

“Guilt Letting of Parents” - This means the professional plays on the guilt of the parents to manipulate the parent to go to “extraordinary efforts” to “fix” their child. This is illegal in some states and is unethical in all cases. It involves inappropriate representation of the “power” of the treatment being offered the child. A sample state statute for Licensed Psychologists in Florida states: 64B19-17.002(l) [Making misleading, deceptive, untrue, or fraudulent representations in the practice of psychology. The penalty shall be a public reprimand and an administrative fine of $1,000 to $10,000. See link.] This involves:

• Making the parents think and feel that no matter what they do for their child is “never good enough,” “done well enough,” or “sophisticated enough” to “fix” the child
• Letting parents know that they can never spend “too much money,” “too much time,” or “too many personal or physical resources” on their child in order to “fix” the child
• Convincing the parents that only this one particular professional or program is “right” of their child and that they would be doing irreparable harm to their child if they changed professional or program for their child

“Blaming the Parents” - This means the professional blames the parents, if the child is not making substantial developmental progress. The professional does not appropriately inform the parent that each child is different (principle of individual differences) and that there is no predictable pattern to expect in the progress a child will make as a result of being involved in the therapeutic process. This involves:

• Embarrassing and humiliating parents verbally and non-verbally by blaming them for the fact that their child is not progressing or changing quick enough or substantially enough. The message given in this case is that “of course it is not the fault of treatment offered by the professional” but rather the lack of extensive follow through on the part of the parent that explains the lack of progress. REALITY is - due to individual differences, the child is not be progressing. This might be due to being on a developmental plateau or because the prescribed treatment does not work with this child like it does with others.  

“Gouging the Parents” - This means the professional charges exorbitant fees for services and treatments. These fees are typically not customary or ordinary in the professional’s respective professional field. This involves:

• Taking advantage of the shortage of trained professionals or shortage of the desired medication or treatment in a community and therefore charging sometimes-double, triple and in few cases 8 times as much as what the service or treatment would ordinarily cost.

What do you do, if you think you are being exploited?

If you feel you are being exploited by any of the professionals involved in working with your child:

• First: confront the professional and ask for such exploitation to cease
• Second: if the professional continues to be exploitive then contact the professional’s respective professional association or state licensing or certifying board and file a complaint.