In recent years, mental health issues have gained more attention with an estimated 54 million people in the nation suffering from mental disorders. According to a 2001 study by the World Health Organization, mental health ranks first in terms of causing disability in the United States, Canada, and Western Europe (WHO, 2001). The study also found that mental illness — including depression, bipolar disorder, and schizophrenia — accounts for 25 percent of all disability across major industrialized countries. For individuals with autism spectrum disorders (ASDs), the risk of developing mental illness is no less than it is for the general population. For their parents and caregivers, mental illness presents yet another challenge to add to the list of social, educational, and behavioral issues they have to contend with. The intent of this article is to address some of the most common questions parents and caregivers pose about mental illnesses in individuals with ASDs, as well as to offer strategies that will allow them to successfully advocate for quality treatment.
1. What is mental health and how is defined for people with ASDs?
Can a person with an autism spectrum disorder be “mentally healthy”? Before that question can be answered, we must define “mental health” and what it means for any person, whether neurotypical or on the autism spectrum. There are endless debates in the psychological literature about this question, but for the purposes of this article, I will offer Dosen’s (1993) idea. Mental health is achieved when one has:
- Limited stress in daily living
- A place of one’s own and a role in his/her surroundings
- Achieved functioning in accordance with one’s own abilities
A person with ASD may need help in tackling obstacles that can potentially interfere with the attainment of the above criteria. However, with the necessary help, persons with ASD can achieve and/or maintain mental health.
2. Can a person with an ASD have a mental health problem too?
Throughout the lifespan, there are many things that can lead any person to develop a mental health problem. These issues do not necessarily cause mental illness, but simply increase a person’s vulnerability. Some risk factors for the neurotypical population are:
- Poor social support
- Presence of central nervous system damage
- Low expectations for success
- Sense of helplessness
- Limited economic resources
- High levels of stress in family
- Presence of physical disability
- A chronic medical problem
- A family history of mental illness
Unfortunately, there have not been any thorough studies on the prevalence of mental health disorders in the ASD population. Most studies on “comorbidity,” or the co-existence of a psychiatric condition with ASD, have been based only on case reports (Gillberg and Ehlers, 1998). Preliminary studies have suggested that for some disorders, the incidence is higher for people with ASD than would be found in the general population. For example, Klin and Volkmar (1997) found in a sample of 99 individuals with ASD that 28 percent also met criteria for ADHD, 19 percent showed obsessive-compulsive disorder and 15 percent had depression. DeLong and Nohria (1994) reported a higher incidence of bipolar mood disorder in persons with ASD and within their families than found in the general population. Conversely, psychotic disorders (e.g., schizophrenia) do not appear to be more prevalent in people with ASD (Tantam, 2000), and may even be over-diagnosed in higher-functioning ASD because the individual’s willingness to inappropriately verbalize thoughts can be mistaken as psychosis (Martin, Patzer and Volkmar, 2000).
All of these data must be interpreted cautiously because, as Martin, Patzer and Volkmar (2000) point out, it is difficult at this stage to determine whether symptoms are really part of a separate disorder, or are part of the ASD itself. Also, there is still so much controversy over the precise way in which to define ASD that clear prevalence studies will not be possible until there is more agreement among scientists and practitioners over definitions.
Without accurate statistics, however, we can at least assume that the prevalence of mental disorders would be no less than the general population. In other words, there is no reason to believe that a person with ASD would be less likely than neurotypicals to develop, for example, problems with depression or anxiety. When one examines the above risk-factors, it is easy to imagine how the presence of ASD may actually increase the stress and strain on an individual and his/her family, making mental health needs all the more important for early detection and state-of-art treatment.
3. Do people with ASD have access to the same quality of mental health services that neurotypical people do?
Despite the increased risk mentioned above, individuals with ASD and other developmental disabilities (DD), including mental retardation, cerebral palsy, epilepsy and traumatic brain injury have received inadequate mental health treatment throughout most of the 20th century (see Butz, Bowling, and Bliss, 2000; Dosen, 1993, 2002; MacLean, 1993; Nezu, Nezu and Gill-Weiss, 1992 for more comprehensive reviews). There are many reasons the mental health needs of people with DD were neglected. From the1950s to the early 1970s, the majority of people in the United States with multiple disabilities lived in institutional settings where all treatment and educational needs were inadequately addressed.
As people with DD were moved out of institutions and into the community during the 1970’s and early 1980’s, medical and educational/rehabilitative services improved, but mental health needs continued to be ignored. This is largely due to the fact that mental health professionals were not trained to deal holistically with people with DD and therefore had a very narrow focus on treatment. Clear symptoms of mental health problems were wrongly seen as part of the DD. This type of error is now called “diagnostic overshadowing” (Levitan and Reiss, 1983; Reiss, 1993), which happens when the primary diagnosis of a developmental disorder actually overshadows or masks the presence of a secondary problem. Symptoms that were expressed overtly (e.g., through physical aggression) were labeled as “behavior problems.” Symptoms expressed in subtler ways (e.g., withdrawal, changes in sleep habits, gradual skill regression) often went unnoticed.
Treatment for “behavior problems” relied heavily on pharmacological approaches aimed at reducing problem behavior (e.g., “chemical restraint”). They were applied without a comprehensive assessment of the individual’s psychiatric status. Therefore, significant mental health diagnoses and more appropriate drug options were overlooked. Non-pharmacological approaches were limited to “behavior modification” (Alford and Locke, 1984), systems of rewards and punishments designed to reduce problem behavior. Unfortunately, these approaches were sometimes designed by professionals who were not properly trained in Applied Behavior Analysis (ABA) and learning principles. The resulting contingency systems in these cases were not addressing the true function of an individual’s behavior. In addition, the types of treatments that were known to help non-disabled people with various mental health problems, especially “talk” therapies, were not being offered to people with DD. For various reasons, people with DD were not viewed as candidates for counseling or psychotherapy.
Thankfully, within the past 10 years, there is a greater emphasis on using multi-modal, multi-disciplinary approaches to treatment planning, which includes consideration of the subjective experiences and information-processing styles of individuals (Dosen, 2002; Gardner and Sovner, 1994), as well as the neurobiology and medical factors behind problem behavior. Also, the old view that psychotherapy is not a viable treatment option for people with ASD and other DD has been strongly refuted by several authors (Butz, Bowling and Bliss, 2000; Lynch, 2000; Prout and Strohmer, 1994). For higher-functioning people with ASD, psychotherapy is more naturally considered with these newer attitudes toward people with disabilities (Gaus, 2000, 2002.)
4. How can a caregiver tell when it is time to get a consultation with a psychiatrist?
There can be any number of signs that a person needs a psychiatric assessment. Below are the most common examples.
- There is a dramatic decrease in functioning level compared to the individual’s previous level of ability; a loss of skills.
- Ongoing maladaptive behavior disrupts his/her functioning. It persists even after there has been a thorough assessment and multiple assessment-based interventions designed by a qualified applied behavior analyst.
- The individual is functioning poorly despite being on multiple psychiatric medications without a clear rationale or diagnosis.
- The individual is verbalizing increased distress (e.g., reporting feelings of loneliness, anger, suicidal thoughts).
5. Doesn’t it create problems when people have too many labels? Isn’t the ASD diagnosis enough?
Unfortunately, it is still true in our society that having a mental health diagnosis can be stigmatizing in some situations. There continues to be fear and negative attitudes toward disability and mental illness that is largely based on ignorance. In addition, being incorrectly diagnosed can have devastating affects when inappropriate treatment is applied.
In the face of this, it is all the more important to correctly identify a mental health problem when there is one present. Ignoring psychiatric symptoms in an age when psychiatry and neuroscience are making so many advances can be equally devastating if it means a good treatment is withheld from someone who needs it.
The true purpose of diagnosis is not to label people; rather it is to label the behavior pattern that is problematic for the individual. Why is that important? If behavior can be classified, then it can be linked to similar behavior patterns that have been documented by other mental health professionals. If the behavior is similar enough to one of these well-documented behavioral phenomena, then the caregivers and professionals are given important shortcuts to viable treatment options that have already been shown to be helpful for other people with the same problem. Without this, doctors would have to start from scratch and provide “shot in the dark” treatments with every single new patient.
If you are a caregiver involved in the process of diagnosing a mental health problem in a person with ASD, here are some things to keep in mind to avoid stigma.
- You are helping to classify behavior, not the individual.
- Labeling the behavior helps the individual access treatment that has been supported by research.
- Accurately naming the behavior improves the quality of the ongoing assessment process by enhancing communication between professionals on the treatment team.
6. What can a caregiver do to ensure a person with ASD is getting appropriate mental health treatment from psychiatrists and therapists?
Many times caregivers ask how they can tell if their doctor is prescribing the right type of treatment. Though they can’t tell the doctor what to do, parents want to properly advocate when they go to mental health appointments. There are two important principles for success in advocating for good quality treatment:
Knowing What Questions To Ask
Here are some good quality assurance questions that all caregivers should ask regularly when visiting psychiatrists and psychotherapists (adapted from Sovner and Hurley, 1985).
- Has there been a thorough assessment, including a medical exam to rule out possible medical causes for the problem behavior?
- What is the theory on what is causing the problem behavior?
- What is the psychiatric diagnosis as listed in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV)?
- What evidence was used to arrive at the diagnosis?
- What are the goals of treatment?
- How will the treatment be carried out?
- Is the treatment plan based on the theory of what is causing the problem?
- Is the treatment based on the research literature; is it similar to the treatment that would be offered to non-disabled individuals who have the same mental health diagnosis?
- How are the effects of treatment going to be monitored?
- What signs and symptoms should the caregiver be documenting at home?
- Are there too many pharmacological agents involved?
- Is the individual being over-medicated?
- Is the individual being under-medicated?
- Is drug therapy being changed too rapidly?
- Are doses given on an emergency basis or given as on as-needed basis being used excessively?
- What are the criteria for discharge from treatment?
Practicing Good Communication
You don’t have to be a doctor to seek and share information, which is a large part of what caregivers do on mental health visits. Good communication is a 50/50 process. Both you and the doctor need to be open to an ongoing collaboration in order to help the individual being treated. Because of a mental health professional’s obligation to keep treatment confidential, your involvement as a caregiver will vary according to the functioning level and age of your child. Listed below are good communication practices for each party:
Psychiatrist or Therapist
- Educate patient and caregiver about target signs and symptoms.
- Ask patient and caregiver to keep track of changes and report back.
- Offer and explain treatment options and discuss supporting research.
- Use language that is understandable to a layperson.
- Be open to questions and answer them respectfully.
- Direct patient and caregiver to resources that will enhance treatment.
- Coordinate treatment with all other providers in patient’s life by communicating with them on a regular basis (e.g., other therapists, teachers, case managers, other physicians).
Patient and Caregiver
- Ask the quality assurance questions listed above on a regular basis.
- Make requests of the doctor to ensure he/she is practicing the above.
- Ask for clarification if you do not understand a term used by the doctor.
- Initiate discussions about changes you have observed at home, don’t wait for the doctor to ask you and be prepared to report something at each visit.
- When reporting to the doctor, try to be concise and objective. Keep it short and to the point, using descriptive terms about what you saw or heard; avoid using vague terms that you can’t back up with evidence.
It can be a very confusing and intimidating process to interface with the mental health service delivery system. By practicing the guidelines listed above, you can be more confident that you are advocating for the best treatment for your child’s problem. Remember, you don’t have to be a doctor to ask lots of questions!
For more information and resources on this topic, contact the National Association for Dual Diagnosis (NADD), an organization for persons with developmental disabilities and mental health needs at www.thenadd.org.
Alford, J.D. and Locke, B.J. (1984). Clinical responses to psychopathology of mentally retarded persons. American Journal of Mental Deficiency, 89, 195-197.
American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders, 4th edition. Washington, DC: American Psychiatric Association
Butz, M., Bowling, J.B., and Bliss, C.A. (2000). Psychotherapy with the mentally retarded: A review of the literature and implications. Professional Psychology: Research and Practice, 31, 42-47.
DeLong, R., and Nohria, C. (1994). Psychiatric family history and neurological disease in autistic spectrum disorders. Developmental Medicine and Child Neurology, 36, 441-448.
Dosen, A. (1993). Mental health and mental illness in persons with mental retardation: What are we talking about? In Fletcher, R.J., and Dosen, A. (Eds.), Mental Health Aspects of Mental Retardation, New York: Lexington Books.
Dosen, A. (2002). Mental health in mental retardation: Current developments and future challenges in Europe (Reprinted from a lecture to the 3rd Congress of European Association for Mental Health in Mental Retardation, Berlin, Germany, September, 2001), NADD Bulletin, 5, 37-42.
Gardner, W.I. and Sovner, R. (1994). Self-Injurious Behaviors: A Functional Approach. Willow Street, PA: Vida Press.
Gaus, V. L. (2002, October). What is cognitive-behavioral therapy and can it be used for people with developmental disabilities? Paper presented at the meeting of Hoeve Boschoord, Zwolle, the Netherlands.
Gaus, V. L. (2000). “I feel like an alien”: Individual psychotherapy for adults with Asperger’s disorder using a cognitive behavioral approach. NADD Bulletin. 3, 62-65.
Gillberg, C., and Ehlers, S. (1998). High-functioning people with autism and Asperger syndrome: A literature review. In E. Schopler, G.B. Mesibov, and L.J. Kunce (Eds.), Asperger Syndrome or High-Functioning Autism? (pp. 79-106). New York: Plenum.
Klin, A., and Volkmar, F.R., (1997). Asperger’s syndrome. In D.J. Cohen and F.R. Volkmar (Eds.), Handbook of Autism and Pervasive Developmental Disorders (2nd ed., pp. 94-112). New York; Wiley.
Levitan, G.W. and Reiss, S. (1983). Generality of diagnostic overshadowing across disciplines. Applied Research in Mental Retardation, 4, 59-64.
Lynch, C. (2000). Modifying psychotherapy for individuals with mental retardation. NADD Bulletin, 3, 85-87.
MacLean, W.E. (1993). Overview. In Matson, J.L., and Barrett, R.P. (Eds.), Psychopathology in the Mentally Retarded, 2nd Ed. Boston: Allyn and Bacon.
Martin, A., Patzer, D.K., and Volkmar, F.R. (2000). In Klin, A., Volkmar, F.R., and Sparrow, S.S. (Eds.), Asperger Syndrome. New York: Guilford Press.
Nezu, C.M., Nezu, A.M., and Gill-Weiss, M.J. (1992). Psychopathology in Persons with MentaL Retardation: Clinical Guidelines for Assessment and Treatment. Champaign, Ill: Research Press.
Prout, H.T. and Strohmer, D.C. (1994). Issues in counseling and psychotherapy. In Strohmer, D.C., and Prout, H.T. (Eds.) Counseling and Psychotherapy with Persons with Mental Retardation and Borderline Intelligence, Brondon, VT: CPPC.
Reiss, S. (1993). Assessment of psychopathology in persons with mental retardation. In Matson, J.L., and Barrett, R.P. (Eds.) , Psychopathology in the Mentally Retarded, 2nd Ed. Boston: Allyn and Bacon.
Sovner, R. and Hurley, A.D., (1985). Assessing the quality o psychotropic drug regiments prescribed for mentally retarded persons. Psychiatric Aspects of Mental Retardation, 8/9, 31-38.
Tantam, D. (2000). Psychological disorder in adolescents and adults with Asperger syndrome. Autism, 4, 47-62.
World Health Report 2001 (2001). Geneva, World Health Organization.
Valerie L. Gaus, PhD, has been a practicing cognitive-behavioral therapist serving adults and adolescents with dual diagnosis (intellectual disability with comorbid psychiatric disorder), autism spectrum disorders, mood disorders, and anxiety disorders since she received her doctorate in clinical psychology from Stony Brook University in 1992. Since then she has maintained a private practice on Long Island, New York, and serves as the staff psychologist for the Vincent Smith School in Port Washington, New York. Dr. Gaus is on the advisory board of the Asperger Syndrome and High Functioning Autism Association, the grant review committee of the Organization for Autism Research, and the adjunct faculty at Long Island University/C. W. Post. She was also a founding board member of the New York Metro chapter of the National Association for the Dually Diagnosed. Dr. Gaus has written numerous articles and book chapters on mental health issues in developmental disabilities and has lectured extensively on these topics across the United States and abroad. Her most recent work, Cognitive-Behavioral Therapy for Adult Asperger Syndrome, was just published by Guilford Press.