By Coralia Ivan-Suciu
The primary focus of this blog is to provide education and specific resources to the caregivers of individuals dually diagnosed with an intellectual disability and a psychiatric disorder. Understanding and being able to recognize signs and symptoms of mental illness will empower families to make informed decisions that will ultimately lead to more specific assessments, accurate diagnoses and better treatment overall. All families wish for the best treatment solution for their loved ones, yet access to care has not proved to be a straight forward path. The process of obtaining referrals to the correct entities and leading to the desired/most effective treatment can be daunting.
Research shows that mental health issues are seven times more prevalent in the intellectually disabled population, yet treatment options have been largely ignored. One recent study concludes that a previously underdiagnosed mental disorder was found in 29.6% of the sample (the most prevalent of these being depressive and anxiety disorders). The same study found a correlation between the presence of a psychiatric condition and challenging behavior in the mild/moderate intellectually disabled population. Yet another research experiment contended that there is a moderate association between anxiety and challenging behavior, which may suggest that addressing the anxiety component will lead to attenuation or even elimination of the inappropriate manifestations. Why are these statistics important?
I included these research-based findings to underline the importance of understanding and identifying psychiatric disorders in order to access appropriate treatment options. Several challenges exist which may impede a smooth evaluation process and consequently ensuring professional treatment. These are both at the clinician and caregiver level.
ROADBLOCKS TO DIAGNOSIS AND TREATMENT
There is little consensus among psychiatric providers and psychologists with regard to diagnosis of mental disorders within the intellectually disabled population. From my experience (over 12 years), psychiatric providers practicing both in a private and hospital setting, hesitate most often to place a psychiatric diagnosis and may explain mental illness-suggestive symptoms as resulting from brain disorganization attained from the intellectual disability itself. A second obstacle is represented by the maladaptive behaviors which mask typical symptoms of a given psychiatric disorder leading the professional to conclude that the latter service a mere purpose of communication and are not in fact markers of mental illness. The third and most relevant consideration is the lack of appropriate instruments to assess psychiatric disorders in the intellectual disabled individuals. Professionals must rely on the valid and reliable scales which were tested on the general population. Clinical judgment plays a major role in the diagnostic process but given the lack of training and exposure of some professionals in the intellectual disabilities field, a new impediment emerges.
Caregivers, including family members of individuals with intellectual disabilities are often overwhelmed and a large segment may be in denial with respect to their children’s developmental diagnosis (IDD) or the possibility of a comorbid psychiatric diagnosis. Training initiatives and parent counseling workshops have proved invaluable in this regard. Similarly, being able to access dedicated and knowledgeable professionals such as care managers, advocates, social workers and trained medical professionals constitutes a vital resource on the road to correct diagnosis and effective treatment.
Another significant consideration I have encountered in working with families of individuals with special needs is medication phobia. It is true that no family member not a professional in the field necessarily wishes for a person with intellectual disability or dually diagnosed (i.e. with an additional psychiatric disorder) to be placed on a psychotropic regimen for addressing mood or behavioral instability. However, the person’s specific mental illness diagnosis and the medical team’s recommendation may call for a psychopharmacology component in the individual’s plan of care. This is ok and there is no reason to panic or attempt to circumvent the psychiatrist’s attempts at treatment.
I am not a medical professional but I have worked closely with talented psychiatrists within the last twelve years as well as serving as a research assistant for various drug trials in the study of mood and anxiety disorders. I have seen incredible transformation in a person’s quality of life whenever the parent collaborated and followed their child’s medication orders. I have also witnessed traumatic results (i.e. cognitive decompensation) whenever families chose to interrupt their child’s psychotropic regimen or administer the medication inconsistently. Sadly, I have observed medical providers over-medicating individuals with intellectual disabilities at the request of the parents. Neither of these situations I just described should be emulated or enforced.
The best option is to identify an appropriate medical provider and assess if it is a good fit for you and your child. Once you develop rapport with that professional, it is important to provide accurate feedback and report any issues or concerns. It is relevant to note that psychiatrist do not consider your children “guinea pigs” when modifying or adjusting psychotropic medication. They simply utilize the process of elimination, starting with the mildest, less side-effect producing mediation and progressing gradually toward stronger agents. Arriving at the right combination of medication is another important task of the provider.
Mental health issues that afflict the intellectually disabled population are not only problematic with regard to diagnosis. They require vigorous and sometimes complex treatment methods. Research has been limited for providing precise and effective treatments targeted for this population. As such, clinicians are forced once again to work with instruments and evidence based on the general population until more specific methodology is generated.
Adopting a biopsychosocial framework for diagnosis and treatment of co-occurring mental disorders with intellectual disabilities is always preferred. Eliminating medical concerns and then working through possible environmental and family-based stressors as well as identifying potential psychiatric concerns affecting caretakers are also very important steps in accessing correct treatment methods.
Over-reliance on psychopharmacology as the single treatment of choice is not a solution as it leads to a deterioration of one’s quality of life and it may also lead to cognitive regression as far as skills acquisition and learning. Sedation (due to an over-abundance of psychotropic medication) represents a chemical restraint, which in itself, is abusive. Medication management should be utilized in conjunction with specific types of therapies which may include cognitive-behavioral, trauma-focused, bereavement, art/music etc. Additionally, the individual’s care plan should be comprehensive and inclusive of recommendations for healthier life-style changes such as regular exercise, socialization opportunities, teaching of self-soothing strategies as well as other efficient coping tools. These extra considerations will not only support the individual’s quicker recovery and improvement of daily functioning but will also promote higher independence and maintenance of these coping skills/adjustment ability to stressors and appropriate social behaviors over time.
In conclusion, the prevalence of mental health diagnoses within the intellectually disabled population should be overlooked or minimized. Individuals with intellectual disabilities, both children and adults, can develop throughout their life-time a psychiatric diagnosis. Stressors such as severe family circumstances, sudden deaths, relocations or other pertinent changes in their environment, traumatic experiences, puberty as well as familial transmission (i.e. genetic-based) can all trigger mental illness. The following steps are vital in attaining successful results with regard to diagnosis and treatment of a mental disorder within the intellectually disabled population.
STEPS FOR SUCCESS
- IDENTIFICATION OF SIGNS AND SYMPTOMS
Caregivers need to have a clear awareness of what differentiates mental illness from the developmental intellectual disability and also understand their child’s baseline functioning, including their defining characteristics. Recognizing possible signs and symptoms of a mental disorder is crucial for making a referral for further evaluations which will lead to a diagnosis and then, treatment. Ignoring these initial signs of mental illness or rationalizing that they will miraculously disappear or correct themselves is a great disservice to your child. More so, easily treatable symptoms may worsen over time causing extreme distress in a person’s life and leading eventually to prolonged hospitalizations for stabilization.
- IDENTIFICATION OF AN APPROPRIATE MEDICAL PROFESSIONAL
Identifying a skilled medical professional that one feels comfortable with is the second step toward recovery. Following all the treatment modalities recommended by the multidisciplinary team is a third very important component. Last but not least, caregivers and family members may need to address personal issues and environmental concerns that may inadvertently exacerbate their child’s condition.
- EXPANDING RESEARCH AND SHARING KNOWLEDGE
Developing evidence-based interventions to treat mental problems of individuals with intellectual disabilities is a burden that falls both on clinicians and researchers. Practitioners need to expand their knowledge to acquire specific training in the field of intellectual disabilities which may include general characteristics, level of functioning differences, strengths assessment as well as response to various therapeutic interventions and psychopharmacology. Researchers, on the other hand, need to engage in further experimental projects to develop targeted tools for assessment and improvement of favorable prognosis. The sharing of knowledge between these two entities is vital for the advancement of treatment for the dually diagnosed. Funding opportunities should be identified (including at the state level) for this worthy purpose.
- Costello H, Bouras N. Assessment of mental health problems in people with intellectual disabilities.Israel Journal of Psychiatry 2006; 43(4): 241-51.
- Munir Kerim M. The co-occurrence of mental disorders in children and adolescents with intellectual disability/intellectual developmental disorder. Current Opinon in Psychiatry Journal 2016 Mar; 29(2): 95-102
- Pena-Salazar C, Arrufat F, Santos JM, Fontanet A, Gonzales-Castro G, Mas S, Roura-Poch P, Valdes-Stauber J. Underdiagnosis of psychiatric disorders in people with intellectual disabilities: Differences between psychiatric disorders and challenging behavior. Journal of Intellectual Disability 2018 Sept 5.
- Pruijssers AC, van Meijel B, Maaskant M, Nijssen W, van Achterberg T. The relationship between behaviors and anxiety in adults with intellectual disabilities: A literature review. Journal of Intellectual Disability Research 2014 Feb; 58 (2): 162-171
- Vereenooghe L, Flynn S, Hastings RP, Adams D, Chauhan U, Cooper S-A, Gore N, Hatton C, Hood K, Janoda A, Langdon PE, Mc Namara R, Oliver C, Roy A, Totsika V, Waite J. Interventions for mental health problems in children and adults with severe intellectual disabilities: A systematic review. BMJ open, 2018, vol 8, issues 6.
Coralia Ivan-Suciu has earned her psychology BA from Marymount Manhattan College and her psychology MA with a special focus on clinical coursework from New School for Social Research. Her training and experience includes research and applied work in the following fields of study: psychopharmacology, learning and development, psychopathology, teaching elementary and middle school including special education, adult/child individual and family psychotherapy with the normal and developmentally disabled populations and psychosexual counseling. Within the last ten years she has specialized in behavior modification techniques and applied behavioral science principles and has worked extensively with all age ranges and diagnostic categories, both developmental and psychiatric. She has worked as a behavior specialist for various agencies and is currently serving as the Senior Behavior Specialist within the Crisis Team at Innovative Resources for Independence. Present responsibilities include supervisory duties, assessment and evaluation of crisis cases, development of behavior support plans, parental counseling and training, staff training on different behavioral strategies and techniques, networking and close collaboration with collateral services (hospitals, schools, other agencies, psychiatrists) for treatment purposes and effective management of maladaptive behaviors.