Josie worked in the disability services sector for 4 years as well as having decades of personal experience to bring light on this topic
The Risperdal Epidemic
Parents and carers often struggle to cope with the behavior associated with ADHD (Attention Deficit Hyperactivity Disorder) and Autism or children who are diagnosed with ASD (Autism Spectrum Disorder). These children may have intellectual disabilities as well, and be what is now commonly referred to as "alphabet kids." Medications such as Risperdal (Risperidone) have become commonly used to treat associated behavior difficulties but the side effects can be devastating.
There are a number of medications that are options for use in the treatment of behavior associated with these diagnosis', but it must be kept in mind that the medication doesn't treat the patient. Unlike mental illness these diagnosis' can not be treated, but merely have the difficult behavior associated masked for ease of living. Sometimes the person may also have depression or anxiety in which case different medications may be prescribed to treat these differential diagnosis'. This article will focus on the use of Risperdal for issues which are predominantly behavioral not necessarily linked to a mental health diagnosis.
The FDA approved the drug for use in the treatment of irritability in children between the ages of 5 and 16 in October 2006. Risperdal is a drug in the class of antipsychotic medications and is more commonly used for those diagnosed with schizophrenia and bi-polar disorder. The soothing effect of the medication on the brain was then found to have positive results when used on persons with intellectual disabilities and diagnosis' such as Autism and ADHD.
As is the case with most medication handed out to treat mental illnesses little information is passed when prescribing this medication about the potential side-effects. The ultimate question is whether or not the side-effects and risks out-weigh the potential benefits. In looking at this a determination must also be made as to who is benefiting from the medication. Is the child or adult with behavior difficulties benefiting, or the parents and care givers who are having an easier time managing them.
Side effects of Risperdal
Side Effects Masked by the Disability
The above video shows an example of one of the more debilitating potential side effects of the use of Risperdal. While working in the disability sector the most difficult situations I encountered were when I could clearly see with my own eyes that a person was suffering side effects, but the carers attributed it to the disability.
If you take a person with an intellectual disability they may also have physical disabilities and problems with their motor movements. A person who has Autism, ADHD or other mental health diagnosis combined with an intellectual disability may have been prescribed Risperdal since they were very young and slowly developed a "tick" or dystonia which is debilitating to muscle movement. The child may end up with what is commonly known among mental health professionals as the "schizophrenic shuffle." Not to mention the effect the drug may be having on development as the child grows. The now adult has a slow gate, may have some tardive dyskinesia neck movements, but the carers just think it's part of the persons disability.
I personally met a man who was almost 50 and had been given Risperdal from his late teen years after a psychiatrist had decided he had schizophrenia when he was 18. The diagnosis had not been revisited, he had no check ups with psychiatric professionals in over 30 years and the medication was now up to 8 mg a day. The man obviously shuffled along and dribbled from the mouth. When questioned about the possibility that this man may not need the extremely high dose of medication, and it was potentially limiting his quality of life, carers and parents were adamant it was how he'd always been and attributable to his disability.
Alternatives To Risperdal (Risperidone)
If a child or adult is displaying irritability or aggressive behavior and they have a diagnosis such as ASD (Autism Spectrum Disorder) or ADHA (Attention Deficit Hyperactivity Disorder), whatever their intellectual capacity, I guarantee there's a reason for the problem. Risking the side-effects of medications like Risperdal should be a last resort, but medical professionals unfortunately bring the drug out as a first line of defense. Some have theorized the commercial and political control of drug companies and possible kick backs but I am not going to explore that topic here.
A person with a brain that functions differently than our own is living in a world where they are thinking on a different level than the "neurotypical" person is thinking. When a person becomes irritable or aggressive especially in a social environment if analysed and looked at from their eyes rather than our own it brings a new perspective. What happens when the behavior is medicated is a band-aid is placed over the problem. The individual's brain is chemically soothed and the reactions minimized.
What if the behavior was understood so the underlying issue was addressed? Many people with the unseen disabilities, for example a non-verbal autistic person, don't have any other way of expressing themselves except by acting out. So they are being aggressive? Well maybe they are communicating that they don't like what is happening to them. It may be as simple as a dripping tap, which for someone with Autism in a high sensory mood would sound like a hammer on their head.
You need to medicate them because otherwise they can't go out in public? Chances are they behave poorly because they don't like going out in public, or you are not taking them where they want to go. Is the shop overcrowded? Are the lights too bright? It could be as simple as uncomfortable shoes or as significant as a toothache.
Side Effects of Risperdal
What are the Side Effects of Risperdal?
The full list of possible side effects listed on the offical pamphlet of Risperdal (Risperidone) are "parkinsonism, akathisia, dystonia, tremor, sedation, dizziness, anxiety, blurred vision, nausea, vomiting, upper abdominal pain, stomach discomfort, dyspepsia, diarrhea, salivary hypersecretion, constipation, dry mouth, increased appetite, increased weight, fatigue, rash, nasal congestion, upper respiratory tract infection, nasopharyngitis, and pharyngolaryngeal pain."
To read the full pamphlet which goes into more detail see this link http://www.janssenlabels.com/package-insert/product-monograph/prescribing-information/RISPERDAL-pi.pdf
The fine print is absolutely alarming. The most harrowing is the cause of breast growth in boys. The medication can cause lactation even in males and a woman on the drug can have her menstrual cycle cease completely while taking the medication. The biggest difficulty is with most pharmacuticals that the clinical trials and recorded data is only a slice of the practical impacts the medication have on the general population.
If you look at the research but also read about peoples personal experience with the drug the questions have to be asked whether the benefits outweigh the risks. Personally I would have wanted to have tried every possible alternative and natural remedy as well as behavioral management techniques on the individual before resorting to Risperdal. Is the quality of life of the individual going to benefit to the extent that it's worth potentially loosing brain function? And honestly think about whether the priority is the quality of life for the person taking the medication, not the ease of life for the carer or parent.
The content of this article and especially the linked video's demonstrate that serious consideration needs to be had when sitting in a doctor's office and deciding whether or not a script for Risperdal is the solution to your problem. I have come across many who had they known the consequences would never had allowed it to be administered to their child or disabled adult that they care for.
Unfortunately because dissemination of information about the side effects is generally not abounding from the medical professionals who assure us it is worth trying, many fall innocently into giving the drug to the individual or choosing to take it themselves should they have capacity as adults. The internet is also plastered with the pharmaceutical companies information intent on pushing their drug as the most suitable alternative.
Research is key, and listening to stories of others is so very important. I encourage you to post your own experiences in the comments so we can start the discussion and educate each other about the real practical outcomes of Risperdal use for this purpose.
WARNING: Ceasing any medication abruptly can have serious harmful consequences. This article is for information only and any decisions about medications should be made in consultation with the appropriate health professional.
Tim Truzy from U.S.A. on December 31, 2018:
Excellent article. Care givers need more information about the potential for damaging side effects to these drugs. This article is very informative and helpful in that regard. I have read recently there have been studies which suggest that autism may be a product of what may be going on in the large intestines and positive results were found with feces transplants. (This is a fact reported in Science News.)
Yet, people in the mental health field need to be better informed and your article provides great data.