Maria Quintero-Conk, Ph.D., FAAIDD

By the end of the session, participants will be able to:

◦ Identify appropriate treatment strategies for

people with ID and Autism who are experiencing substance abuse or are at risk for suicide.

◦ Analyze risk and protective variables related to

substance abuse and suicide in target population.

In the 1950s, an important social experiment began that would culminate in deep cultural change for people with mental disabilities.

Realizing that many people in

institutional care could live in communities, states began discharging people with mental illness and with intellectual disabilities (IDs) into communities.

“Normalization” included

unanticipated risks

Adults with ID are generally less likely to use substances than adults without ID.

As a group, a substantial number of people with ID live with families or other caregivers who provide some degree of monitoring; therefore, the opportunities to engage freely in all adult choices can be limited by the presence of a caregiver.

Caregiver presence does not prohibit all opportunities.

Some people with ID do use alcohol and illicit

drugs Those who do so are more likely to develop an

abuse problem. ◦ In a 2010 study, Slayter reviewed Medicaid healthcare

billing claims and concluded that 2.6% of all people with ID had a diagnosable substance abuse disorder.

◦ Other estimates using different methodologies vary widely, ranging as high as 26% (Strain, Buccino, Brooner, Schmidt, & Bigelow, 1993).

When a person with ID also has a mental illness the estimates of co-occurring substance abuse range from 7% to 20% (Sinclair, 2004).

The research in this area is sparse, but the numbers are alarming, especially compared with substance abuse in a non-ID population of adults with mental illness, where the rate estimated to be 7.6% (Substance Abuse and Mental Health Services Administration, 2008).

The myth that people with ID do not drink alcohol or do drugs has been dispelled.

As a group, they tend to begin drinking alcohol a couple of years later than their peers without ID

They are less likely to be Caucasian They are less likely to seek help for their problem …and when they do, the resources that are helpful for

the general public fall short of meeting their needs. They are at greater risk of complications from drinking

because they tend to be prescribed medications for other conditions, such as seizures, and co-occurring mental illness that might negatively interact with alcohol and drugs.

Research in this area is lagging.

Modified Alcoholics Anonymous (AA)

◦ Concept of powerlessness over substances is usually too abstract for people with ID

◦ Modified content instead emphasizes being capable and empowered to make changes in one’s life (Phillips, 2004).

Reading skills ◦ People with ID have limited reading ability. ◦ The books, pamphlets, and signs used in AA are written

at an eighth- to ninth-grade level (Sinclair, 2004), well beyond what most people with ID can read and comprehend, if they can read at all.

Cognitive skills ◦ AA depends heavily on spiritual concepts. ◦ While having ID does not imply that a person is

incapable of having spiritual beliefs, the application of these concepts to recovery is a higher-order function that is often beyond the cognitive ability of the person with ID.

◦ Analogies and metaphors, used liberally in recovery literature and discussions, can be beyond the comprehension of the person with ID.

Social and communication skills ◦ An ID diagnosis includes deficits in adaptive behavior,

which includes the person’s ability to engage in social exchanges.

◦ Limited communication skills are barriers to someone sharing his or her story and engaging in small talk, which is often the glue of relationships in their early stages.

Meeting structure and flow ◦ AA meetings follow a common process: opening welcome,

book study, step study, discussion, and sharing. ◦ The welcome may involve stating the rules of the group,

including anonymity, followed by a reading from the Big Book, a study of one of the 12 steps, and then open sharing.

Simplify the materials ◦ Readings from the Big Book can be simplified into

more concrete language using shorter sentences and including visual supports.

◦ A chart on an easel provides the ability to draw an idea or, with preparation, pictures from magazines and short videos can be introduced to illustrate concepts.

Repetition and checking for comprehension ◦ After introducing a concept, it is helpful to check for

comprehension. ◦ This exchange is in direct contrast with the AA flow of

strict voluntary initiations of interactions, but the attention of a person with ID is greatly improved by varying stimuli and promoting exchange in which the person repeats or paraphrases what they have heard.

◦ The facilitator should remain sensitive to a participant’s

desire to remain silent and such choice should be respected, with follow-up after the group to confirm that the lack of active participation is not masking lack of understanding.

Use of a teaching approach ◦ In AA, learning occurs incidentally as members

share and internalize the experiences of others.

◦ This process can be too complex for most people with ID, who can benefit from a didactic portion of a meeting in which the facilitator specifically teaches key points of a concept from the Big Book and/or one of the 12 steps using language, materials, and role playing exercises that are at the participants’ level of comprehension.

More work is needed in this area to develop empirically based interventions for a growing

social problem.

Most suicides are related to psychiatric disease, with depression,

substance use disorders and psychosis being the most relevant

risk factors

Bachman (2018)

Approximately one third of

persons with IDD have a co-existing

psychiatric disorder.

AUTISM Nearly 50% of adults with Autism will experience depression

Adults with autism are about four times more likely to experience depression than other people

Average rate of suicidal ideation 66% ◦ Average prevalence for suicide attempts is 35% ◦ Mortality rate 0.31% (compared to 0.04%

matched controls)

Among children identified with ASD who had IQ scores available, nearly a third (31%) also had intellectual disability. ◦ Stated differently, about 2/3 had IQ in the

average range

Among adults aged ≥18 years in the United States during 2013:

An estimated 9.3 million adults (3.9% of the adult U.S. population) reported having suicidal thoughts in the past year. ◦ Adults aged 18 to 25 = 7.4% ◦ Adults aged 26 to 49 = 4.0% ◦ Adults aged 50 or older = 2.7%

An estimated 2.7 million people (1.1% ) made a plan about how they would attempt suicide in the past year.

Among students in grades 9-12 in the U.S. during 2013:

17.0% of students seriously considered attempting suicide in the previous 12 months

13.6% of students made a plan about how they would

attempt suicide in the previous 12 months 8.0% of students attempted suicide one or more

times in the previous 12 months 2.7% of students made a suicide attempt that resulted

in an injury, poisoning, or an overdose that required medical attention

Data from the National Vital Statistics System, Mortality

From 1999 through 2014, the age-adjusted suicide rate in the United States increased 24%, from 10.5 to 13.0 per 100,000 population.

Suicide rates increased from 1999 through 2014

for both males and females and for all ages 10–74.

The percent increase in suicide rates for females

was greatest for those aged 10–14, and for males, those aged 45–64.

https://www.cdc.gov/nchs/products/databriefs/db241.htm

Family history of suicide

Family history of child maltreatment

Previous suicide attempt(s)

Cultural and religious beliefs (e.g., belief that suicide is noble resolution of a personal dilemma)

History of mental disorders, particularly clinical depression

Feelings of hopelessness

Isolation, a feeling of being cut off from other people

History of alcohol and substance abuse

Impulsive or aggressive tendencies

Loss (relational, social, work, or financial)

Physical illness

Local epidemics of suicide

Easy access to lethal methods

Barriers to accessing mental health treatment

Unwillingness to seek help because of the stigma attached to mental health and substance abuse disorders or to suicidal thoughts

Protective factors buffer individuals from suicidal thoughts and behavior.

Effective clinical care for mental, physical, and substance

abuse disorders Easy access to a variety of clinical interventions and

support for help seeking Family and community support (connectedness) Support from ongoing medical and mental health care

relationships Skills in problem solving, conflict resolution, and

nonviolent ways of handling disputes Cultural and religious beliefs that discourage suicide and

support instincts for self-preservation

For years, ID has been thought to be a “buffer” against suicide

Not studied sufficiently

People with ID have fewer protective factors

In ID, higher risk of suicide is correlated with lower IQ

Higher suicide risk, lower mortality

◦ In Autism, higher IQ is correlated with higher rate of Depression

42% have MI

◦ Slightly above 35-37% in current literature, but within ranges often cited

8% are suicidal, with history of hospitalization and attempts/threats

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Suicide MI

150 cases seen for intake at the Local IDD Authority (LIDDA) at Tri-County Behavioral Healthcare between 6/11/15 to 1/26/16

Mr. B ◦ 35yo male with Down syndrome with moderate ID (IQ

46). He has lost his appetite for favorite foods. He used to look forward to going to day hab but has been increasingly combative in the mornings over the last six months when caregivers wake him. At day hab he puts his head down and slaps at people who try to wake him or engage him in activities. He also becomes aggressive when staff instruct him to bathe. Mr. B has always had limited speech (two and three word combinations) but he has gradually stopped talking except in rare circumstances. Last week, he alarmed staff by swallowing several pieces of paper.

◦ Recent events: One staff person retired after 11 years in the

program. Two roommate changes within a year and a half

◦ Choice of means; generally linked to opportunity

Hanging

Poisoning

Jumping from heights

Running into traffic

Drowning

Stabbing/slashing

Attempts with more atypical means ◦ Eating coins ◦ Biting an electrical cord ◦ Refusing to eat

Boris ◦ 10yo male with ASD. IQ 98, adaptive behavior

moderately impaired with greater deficits in social skills and communication. In class, he wound a belt around his neck and quickly tightened it. The teacher was able to release it and he was hospitalized for 5 days. After discharge, he returned to school without further incident, but kept talking to his parents and writing long essays about wanting to die. One month later, he slipped out of the house at night and was picked up by police who found him weaving in and out of cars on a busy road. He calmly said that he wanted to die. His doctor recommended inpatient treatment, but the family could not find a hospital to admit him because he presented calmly. He returned home and continues to say that he wishes he were dead.

Family history of suicide

Family history of child maltreatment

Previous suicide attempt(s)

History of mental disorders, particularly clinical depression

History of alcohol and substance abuse

Feelings of hopelessness

Impulsive or aggressive tendencies

Cultural and religious beliefs (e.g., belief that suicide is noble resolution of a personal dilemma)

Local epidemics of suicide Isolation, a feeling of being cut off from other

people Barriers to accessing mental health treatment Loss (relational, social, work, or financial) Physical illness Easy access to lethal methods Unwillingness to seek help because of the

stigma attached to mental health and substance abuse disorders or to suicidal thoughts

Loss (death, adoption, out of home placement, direct care staff leaves)

Less family support

Less reciprocity in relationships

More rejection

More co-morbid physical disabilities

More stress loneliness and isolation

Effective clinical care for mental, physical, and substance abuse disorders

Easy access to a variety of clinical interventions and support for help seeking

Family and community support (connectedness)

Support from ongoing medical and mental health care relationships

Skills in problem solving, conflict resolution, and nonviolent ways of handling disputes

Cultural and religious beliefs that discourage suicide and support instincts for self-preservation

15yo female with Mild ID who attends public school, previously described by family & teachers as friendly but anxious. She is increasingly resistant to getting on the bus every morning. She becomes agitated and frequently says she is “nervous” and “they wish I was dead.” Her behavior program rewards her for “using her words” to express anger, so she has increased cursing. She used to bang her head against walls and furniture as a young child, and resumed this behavior within the past two months. She picks at scabs until they bleed and burrows into the lesions. She had been doing so well in school that she was moved into more Gen Ed time so that she could continue to develop socially as well as academically. Now the ARD committee is reconsidering this change and Lily is upset about going back to LIFE Skills full time. She says she’d “rather die than go back” and recently threatened to take all of her multivitamins at one time.

Suicidal Behavior tends to be minimized

Common reactions ◦ They’re trying to get attention

◦ They don’t understand what they’re saying

◦ They’re not smart enough to do it

Are we treating… or just blocking?

Is supervision to prevent self-harm sufficient treatment?

Is the person’s low IQ overshadowing the seriousness of their threat?

Since it “blew over” in the past, are we comfortable in the knowledge that this, too, shall pass?

Does it matter that the person is depressed? Anxious? Threatening to hurt themselves?

View the world from the person’s standpoint ◦ “What if it was me…?”

Acknowledge

Communicate

Facilitate

People with IDD and ASD are responsive to treatment. Behavior therapy is not always the treatment of choice. Cognitive behavior therapy has shown promise for

people with ASD and Mild ID Medication may need to be explained to family and

other caregivers ◦ Since the person will usually have communication deficits,

others will need to record data to communicate treatment effects on the person’s behalf

◦ The person who accompanies the individual to appointments MUST know the details of the case and report those details accurately

Examine the role of trauma ◦ Loss

◦ Abuse

Examine the role of physical ailments and progressive illnesses

Examine the environment and modify as needed to reduce anxiety

Train health and service providers to recognize signs of depression and anxiety and treat these conditions

Screen for suicidal ideation

Take the signs seriously ◦ Threats

◦ Attempts

◦ Self-injurious behavior

Suicidal behavior in people with ID and ASD is real.

Depression and anxiety, common correlates of suicidal behavior, may “look” different from what we expect.

Identify & treat mental illness Identify & treat substance abuse Identify & treat medical conditions Work with individuals and their caregivers to

develop an action plan for crises Use evidence based therapies (e.g. cognitive

behavior therapy) Use trauma-informed, recovery oriented

treatment that involves social networks and family

Assure good patient-provider communication and data collection

Facilitate multiple points of access to treatment

Integrate and coordinate care across systems & settings

Develop peer support for people with ID and ASD

“As long as society supports suicide prevention

services for anyone, it is morally and legally

obligated to extend these services to people

who are disabled.”

Carol J. Gill, Ph.D.

Bachmann S. Epidemiology of Suicide and the Psychiatric Perspective. Int. J. Environ. Res. Public Health. 2018;15:1425. doi: 10.3390/ijerph15071425.

Hudson, C.C., Hall, L. & Harkness, K.L. J Abnorm Child Psychol (2019) 47: 165. https://doi.org/10.1007/s10802-018-0402-1

Koyanagi, C. (2007). Learning from history: Deinstitutionalization of people with mental illness as a precursor to long-term care reform. Retrieved from http://www.kff.org/medicaid/upload/7684.pdf

McGillicuddy, N. B., & Blaine, H. T. (1999). Substance use in individuals with mental retardation. Addictive Behavior, 24(6), 869-878.

Phillips, M. G. (2004). An outpatient treatment program for people with mental retardation and substance abuse problems. NADD Bulletin, VII(1). Retrieved from http://www.thenadd.org/cgi-bin/checkmember.pl?page=pages/membership/bulletins/v7n1a3

Politte, L.C., Howe, Y., Nowinski, L. et al. Curr Treat Options Psych (2015) 2: 38. https://doi.org/10.1007/s40501-015-0031-z

Quintero, M (2013). Substance abuse in people with intellectual disabilities. Social Work Today, 11 (4), 26.

Sinclair, T. J. (2004). Meeting the needs of persons with mental retardation within a twelve-step program of recovery. NADD Bulletin, VII(6), Retrieved from http://www.thenadd.org/cgi-bin/checkmember.pl?page=pages/membership/bulletins/v7n6a2

Slayter, E. M. (2010). Demographic and clinical characteristics of people with intellectual disabilities with and without substance abuse disorders in a Medicaid population. Intellectual and Developmental Disabilities, 48(6), 417-431.

Strain, E., Buccino, D., Brooner, R., Schmidt, C., & Bigelow, G. (1993). The triply diagnosed: Patients with major mental illness, cognitive impairment, and substance abuse. Journal of Nervous and Mental Disease, 181(9), 585-587.

Substance Abuse and Mental Health Services Administration Office of Applied Studies. (2008). Results from the 2007 National Survey on Drug Use and Health: National Findings (NSDUH Series H-34, DHHS Publication No. SMA 08-4343). Rockville, MD

Maria Quintero-Conk, Ph.D.

mariaq@tcbhc.org

National Suicide Prevention Lifeline Call 1-800-273-8255 Available 24 hours everyday