The link to the article below is here and I think it's a must read for every parent, particularly parents who are new to the diagnosis of autism. Very few parents will not have succumbed to the feelings and anxieties illustrated below and I think it's a safe bet that denial of the illustrated emotions is common. I have noted in red those points that are of particular relevance to recently discussed issues in this blog. Using ABA to examine the behaviours of ABA consultants and parents alike would be an interesting study - any takers?
EXPLOITATION: BEWARE OF THE PARENT'S TRAP
Exploitation is the taking advantage of parents who are vulnerable and willing to do whatever it takes to "cure" their children who have autism, Asperger's syndrome or other special needs.
What makes parents vulnerable to being exploited?
When parents are often 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 child.
What do vulnerable parents look like?
Vulnerable parents may engage in a number of the following activities:
Spend whatever it takes
There is a 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.
Blame the doctor
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.
Shoot the doctor
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 hyperactivity
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. Examples of this could include 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 might lend money to the professional or enter 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.
The Golden bullet promises
This mean 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.
Inordinate lifestyle change
This means that parents being encouraged to make radical changes in their current family life so that child can receive the services of the professional. This could involve the family being uprooted and moved to where the "desired" professional or program is located, or taking on second jobs or loans to afford the services of the "desired" professional or program. It could also involve a professional encouraging a family to completely disrupt 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 many countries and is unethical in all cases. It involves inappropriate representation of the "power" of the treatment being offered the child. Hints of this include 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. A professional may suggest that parents 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, or convince 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.
It might involve 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. It could involve 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 eight 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.
Principles of Ethics for Medical, Therapeutic and Developmental Specialists Who Work with Children with Special Needs
Professionals serving children with communications and learning disorders will embrace the children’s welfare as their primary professional responsibility. Professionals will respond promptly and expertly, without prejudice or partiality to the needs of these children and their families.
Professionals will respect the rights and strive to protect the best interest of these children whose parents are vulnerable due to their emotional state of shock, loss, and grief and as such often have a diminished decision making capacity and thus are impeded in making appropriate treatment choices.
Professionals will communicate truthfully with parents and secure their informed consent for treatment. They will protect families’ privacy and disclose confidential information only with consent of the parents when required by an overriding duty to protect others or to obey the law.
Professionals will deal fairly and honestly with colleagues and take appropriate action to protect these children and their families from health care and developmental interventionists who are impaired, incompetent, or who engage in fraud or deception.
Professionals will work cooperatively with others who care for these children and their families and also advocate on behalf of these children and their parents with any third party payer (insurance company, HMO, state agency, or school system) to insure that all appropriate and needed therapies, treatments, and programming are provided and reimbursed.
Professionals will engage in continuing study to maintain the knowledge and skills necessary to provide high quality care for children with communication and learning disorders and their families, and act as responsible stewards of the health and developmental care resources entrusted to them.
Professionals will support societal efforts to improve public health and safety, reduce the effects of developmental communication and learning disorders, and secure access to appropriate early intervention and other treatment services for children with communications and learning disorders no matter how severe or minor their disorders may be.
closing thoughts
Dr. Mark Rosenbloom the founder and President of the Unicorn Children's Foundation, at the November 1998 ICDL Conference, gave a heart rendering plea for the end and prevention of the exploitation of parents of children with communication and learning disorders. Dr Rosenbloom shared with the audience the following Physician's Prayer that eloquently emphasizes the type of spirit and attitude, which parents ought to be able to expect of the professionals who are involved in working with their children.
The physician's prayer
Supreme God in heaven — Before I begin my holy work to heal the human beings whom Your hands formed. I pour out my entreaty before Your throne of glory, that You grant me the strength of spirit and great courage to do my work faithfully, and that the ambitions to amass riches or goodness shall not blind my eyes from seeing rightly. Give me the merit to regard every suffering person who comes to ask my advice as a human being, without any distinction between rich and poor, friend and foe, good person and bad. When a person is in distress show me only the human being. If physicians with greater understanding, give me the desire to learn from them, because there is no limit to the learning of medicine. But when fools insult me, I pray: Let my love of the profession strengthen my spirit without any regard for the advanced age of the scorners and their prestige. Let the truth alone be a lamp to my feet for every yielding in my profession can lead to perdition or illness for a human being whom your hands formed. I pray You, compassionate and gracious Lord, strengthen and fortify me in body and soul, and implant an intact spirit within me.
From the writings of Rabbi Moshe ben Maimon
Coping.org is a Public Service of James J. Messina, Ph.D. & Constance M. Messina, Ph.D., Email: jjmess@tampabay.rr.com ©1999-2007 James J. Messina, Ph.D. & Constance Messina, Ph.D. Note: Original materials on this site may be reproduced for your personal, educational, or noncommercial use as long as you credit the authors and website.
This site was developed by an Australian social worker as he was concerned that many autism and Asperger's syndrome associations were opting to sell their information instead of providing it freely. The philosophy of this website is that most parents are struggling financially to pay for interventions, and information from 'support services' should not be charging for their support, even if their government funding is marginal.
Although there are many websites dealing with Autism Spectrum Disorders, there are few that have developed a comprehensive range of free fact sheets to provide practical information and strategies, both for people with autism or Asperger syndrome, and their families, carers, teachers, employers and the wider community. (http://www.autism-help.org/forums-links-autistic-spectrum.htm)
