Parental Dilemnas – Diagnosis of their loved ones

“I would do anything to help my child,” is a common sentiment expressed by the vast majority of parents whenever they are at an important choice point in their child’s development. It is therefore not surprising that parents actively consider all options available to support their child’s learning and social behaviour in school, anyone would do the same. When you add to that the clear pressures of information from the internet, advertising and social conformity; the predominance of the ‘medical model’ in assessing behavioural needs and lastly a range of financial inducements from certain state benefits for children ‘diagnosed’ with a DSM-5 type ‘disorder’ (e.g. Disabled Living Allowance in the U.K.) this can cause problems for parents. These ‘disorders’ include Attention Deficit with Hyperactivity Disorder, Oppositional Defiant Disorder, Social Anxiety Disorder, Borderline Personality Disorder and Temporary Grief Syndrome etc. etc. I am sure there is a big variation in parents as to how resistant they can be to any external pressures allowing many to still make an informed and balanced decision. They naturally hope that their beloved child is safeguarded and supported in the best possible ways to deal with life’s testing and difficulties.

In relation to the Safeguarding of Children an increasing number of parents, as research later in this article will demonstrate, have concerns about giving their child psychotropic drugs as the first course of action and then also about the long term risks and side effects. To illustrate the potency of this issue I now include some quotes from parents demonstrating their anguish about some negative changes that they have reported to professionals involved with their child.

“My child was a bundle of fun,” “she was vibrant, full of life and always in the school productions;” “he couldn’t keep still and chattered all the time which kept me amused but the school thought I should take him to the doctors;” “she was wired and driven to succeed” and “he was a handful but there was never a dull moment” are all quotes from conversations had with parents before they chose, under some pressure from school, professionals and medics to take the psychotropic drug route for their child.

Sadly too often these statements from parents are within a matter of months replaced after medication with a range of psychotropic drugs or worse still ‘drug cocktails’ by these comments: “she is a shadow of her former self,” ” her friends in school say she is like a walking ghost,” “he has lost his ‘joie de vie’ and seems dulled to the core of his being,” ” he just sits totally still all the time and walks around the house like a zombie,”  “she is just flatlining and has no interest in succeeding anymore” and ” he has a blank stare all the time and flat expressions in his eyes and on his face.”

Sometimes, thankfully there is not such a huge deterioration in a child’s presenting behaviours. Our experience as educational psychologists is that only in about 20-30% of the cases where we are involved do children benefit from a short term intervention involving a medication. That leaves 70-80% of cases where we feel that is not the result and where potential risks may well occur. In these cases, we feel, varying levels of harm can be done to the children in either a physical and or psychological way.  These outcomes commonly include major sleep disturbance, as a regular side effect of psychostimulants, which is the most illogical outcome of all, as we all know being parents that a good night’s sleep is essential for a child’s equanimity of mood. If any child has a few disturbed nights then it does not take long for some behavioural difficulties to start appearing. We must, as a society, address this ludicrous pharmacalogical contradiction. Rapid weight loss and mood swings are other common outcomes. Psychologically the most serious longer term issue is the effects of stigmatisation and the increasing dependence on ‘biochemical fixes’ whether legal or illegal. There is a growing body of informed opinion and anecdotal evidence that  if young people depend on prescribed drugs early on then they may well have recourse to using either form of drugs in the future.

Certainly Professor Susan Greenfield the distinguished neurologist at Oxford University is convinced of this likelihood and is cited regularly, making this point, in her talks. She also stated in an interview in Times Educational Supplement, January 8th 2007, that,

There is clearly a growing willingness to offer young people drugs which have profound effects on the way they think and behave,

and also,

We should give more thought to changing the shape of our classrooms to fit our children, rather than trying to medicate our children to fit the classroom!

A lot of parents and professionals would agree with her challenging perspective.

Dr Dorothy Rowe, one of the most highly respected Clinical Psychologists of her generation, in the forward of the book, “Making us all Crazy” by Herb Kutchins and Stuart Kirk stated in relation to the DSM manuals,

This crazy redefining of mental health problems in children illustrates how wide any condition could become, opening the door to increased levels of dangerous medication for normal children. Where is this going to stop before responsible professionals and parents say, enough is enough!

There are only a limited number of studies exploring parental views and concerns of their use of psychotropic drugs with their own children. One such study though by Helen Lazaratou et al entitled “Parental attitudes and opinions on the use of psychotropic medication in mental disorders of childhood” obtained results indicating that the opinions and beliefs prevalent in the generation that has now reached parenthood are not consistent with current medical practice. Their negative attitude indicates that there is a need for much better mental heath education. Fear of psychiatric stigmatization and ignorance of the nature of mental disorders are reported to be important factors in the establishment of this attitude, which threatens to rule out pharmacological interventions as a way of dealing with certain childhood mental disorders.

A main finding of this study was that, “Child psychiatrists ought to scientifically inform the parents on the efficacy and safety of a treatment, and then take into consideration the opinions and attitudes of the family. Only by paying attention to the desires, fears and beliefs of both parents and children will they be able to encourage and ensure compliance to the suggested treatment.”

Also from their findings, only 40% of parents believed that there was a proper use of psychotropic medication, with 20% believing that psychiatrists unnecessarily use high doses of psychotropic medication. A total of 80% feared psychotropic agents more than other types of medication. Most parents were afraid to administer psychotropic medication to their child when compared to any other medication, and believed that psychotherapy was the most effective method of dealing with every kind of mental disorders, including childhood schizophrenia (65%). The belief that children who take psychotropic medication from early childhood are more likely to develop drug addiction later was closely correlated with the parental level of education.

Another study in the Journal of Developmental & Behavioral Pediatrics entitled, “Parental Perceptions and Satisfaction with Stimulant Medication for Attention Deficit Hyperactivity Disorder,” by Susan Dosreis et al states, “Few reports have documented parental perceptions of stimulants for attention deficit hyperactivity disorder (ADHD), despite the recent increased use of stimulants among youths. Of 302 parents recruited from six paediatric primary care clinics, 84% completed a survey of their knowledge, attitudes, and satisfaction with the medication their child was taking for ADHD. Two thirds of the parents believed that sugar and diet did affect their child’s level of hyperactivity. Although few parents believed that stimulants could lead to later drug abuse, 55% initially were hesitant to use medication on the basis of information in the media, and 38% believed that too many children receive medication for ADHD. Parents were more satisfied with the behavioral and academic improvement relative to improvement in their child’s self esteem. Attitudes were positively correlated with satisfaction and were more positive among white than nonwhite parents. The findings highlight parental misconceptions and reservations about ADHD medication treatment that require further study to clarify whether race/ethnicity, income, and social status influence their views and use of treatments. ”

These studies clearly emphasisze the urgent need to offer coherent and logical treatment programmes starting with psychological interventions before utilising medication, so that parents understand the process and the risk : benefit ratios of the interventions involved. Better parental education about mental health and the treatments available is urgently needed to maximise the possible benefits of such costly and risky interventions. At a time of reviewing Health Service budgets across the world the cost : benefit analysis of such approaches is essential before rapidly expanding their use, as is occuring at present.

What we are all keen to avoid is the high levels of risk and the tragic outcomes either directly or indirectly related to the sudden death of a child. Nothing can be more traumatising to families and the professionals involved. We have a clear ‘Duty of Care’ to ensure that the risks of this happening are reduced hopefully towards zero. This was sadly not the case in one situation in the U.S. where Mathew Smith’s Death Certificate, on the 21st March 2000 read, “Death caused by long term use of Methylphenidate.” This is one of more than 300 cases reported to ‘Deathwatch’ a voluntary scheme of reporting such tragic events in the U.S. Can we allow this pattern to spread cross the pond to our society where more and more professionals are becoming aware of such critical incidents, usually caused by sudden heart failure? Indeed many of these reports follow children collapsing in school. In two such reported cases the receiving medic questioned the wisdom of such high levels of psycho-stimulant medication. Anecdotal reports from around the U.K. support this and the BBC News website  recently reported nine  such deaths in the U.K. in a five year period.

Matthew’s mother in a website post about her son said, “I want to ask every parent to ask themselves these important questions,” which I include, as I agree strongly that her considered questions and responses may help to protect other children around the world from overzealous prescribers of psychotropics.

1) How different would your decisions be if information was withheld from you? How different would your decisions be if you receive only distorted data?

I, myself, know that our family’s and Matthew’s outcome would have been quite different had we received all information. If I had known certain facts I would have acted differently and my son would be alive today. I am sure that “Informed Consent”, which states that a person’s agreement is needed to allow something to happen,such as surgery,  is based on a full disclosure of the facts needed to make the decision intelligently; i.e. knowledge of risks involved, alternatives, etc.” and “the probable risks against the probable benefits.”

The violation of parent’s rights is when they are not told of the unscientific nature of so-called disorders such as ADHD or the risks of the treatments involving drugs like Ritalin, and they certainly are not told of alternatives to their child’s behavior such as undiagnosed allergies or food sensitivities, which could manifest with the symptoms of what psychiatry calls ADHD.

Here are some facts, she states, that are being withheld from parents that could possibly alter their life decisions for their children and the consequent outcomes.

2) “Do you know that schools in the U.S. receive additional money from state and federal government for every child labeled and drugged?” This, she feels, clearly demonstrates a possible “financial incentive” for schools to label and drug children. It also backs up the alarming rise/increase in the labeling and drugging that has taken place in the last decade within our schools.

3) “Do you know that parents receiving welfare money from the government can get additional funds for every child that they have labeled and drugged?” In this way, many parents from lower socio-economic groups or single mothers are reeled into the drugging their child by these financial incentives being waved in front of them in hard times, making lifestyle changes possible.

4) “Do you know that by labeling your child with ADHD, you are actually labeling them with a ‘mental illness’ listed in the DSM manual, the arguably subjective and unscientific billing bible for psychiatry?” A four figure code has to be provided for the Health Insurance Company from the manual in order that they meet the costs of the prescribed psychotropic drugs. Thankfully this is not the case in the U.K. where decisions are made on the basis of the child’s level of need.

For a very poignant end to this article I would like to share the views of some parents that were featured on a Channel 4 TV news item (see link below) to which I contributed in 2011. Three years on, the powerful messages and key issues still sadly remain. One particularly distraught father stated “If my son had had a life threatening disease and they were going to give him a drug to save his life then I could understand. As far as I am aware there is no one who has dropped dead of ADHD but my son is in a coffin because of the drugs they gave him.” The Coroner shared some of this dignified father’s views.

Dedicated to Dr Elizabeth Newson of Nottingham University, who was internationally renowned for her work in child development and autism. She pioneered assessment approaches that valued parental perspectives. She died aged 84 and a service today, in Oxford where she spent her final years commemorated her massive contribution to child psychology.

References

1),”Making us all Crazy” by Herb Kutchins and Stuart Kirk (Constable Press 1997)

2)  “Parental attitudes and opinions on the use of psychotropic medication in mental disorders of childhood” by Helen Lazaratou et al  in Ann Gen Psychiatry. 2007; 6: 32.

3) “Parental Perceptions and Satisfaction with Stimulant Medication for Attention Deficit Hyperactivity Disorder,”by Susan Dosreis et al in the Journal of Developmental & Behavioral Pediatrics – June 2003 – Volume 24 – Issue 3 – p 155–162.

4) The cited blog: http://www.ritalindeath.com/

5) The Channel 4 News item: http://www.channel4.com/news/adhd-drugs-prescribed-to-under-6s-against-guidelines