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Sources of Distress: A peer-reviewed clinical screening tool developed by Dr. Deborah Bilder at the University of Utah's Huntsman Mental Health Institute.

It uses a branching-logic format to help parents and caregivers identify potential underlying medical and psychiatric conditions that trigger agitation and severe disruptive behaviors in individuals with neurodevelopmental and developmental disabilities.

The survey screens for a wide range of factors, which are generally categorized into medical/physical issues and psychiatric/mental health conditions.

Physical and Medical Sources of Distress

Caregivers are guided to note any physical or environmental triggers that may be causing discomfort, including:

• Gastrointestinal issues: Constipation, reflux, or abdominal pain.

• Sleep disturbances: Insomnia, sleep apnea, or disrupted circadian rhythms.

• Sensory and Communication issues: The inability to express basic physical discomfort or sensory overload.

• Medication side effects: Adverse reactions or interactions from previously prescribed medications.

Psychiatric Sources of Distress

Individuals with developmental and neurodevelopmental disabilities are at a higher risk for co-occurring mental health conditions. The tool specifically screens for: [1]

• Anxiety and Trauma: Generalized anxiety and post-traumatic stress disorder (PTSD).

• Mood Disorders: Bipolar disorder, unipolar depression, and other episodic mood disruptions.

• Psychosis: Symptoms related to psychotic spectrum disorders.

• Attention and Behavioral Issues: ADHD and disruptive mood dysregulation. [1, 2, 3]

How the Tool Works

1. Caregiver Input: Parents or caregivers (professional or family) complete a web-based questionnaire detailing the individual's specific behaviors (e.g., increased fixation, aggression, self-injury).

2. Automated Reporting: The system generates a comprehensive, organized report that highlights potential underlying treatment targets.

3. Collaborative Care: Caregivers take this report to their healthcare provider to guide targeted treatment, evaluate potential diagnoses, and adjust medications appropriately.

For access to the tool or to learn more about the research, visit the Bilder Neurodevelopmental Lab page or review the Autism System Development portal managed by the Utah Department of Health and Human Services.

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Taking Care of YOU: Self-Care for Family Caregivers

Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important and one of the most often forgotten things you can do as a caregiver. When your needs are taken care of , the person you care for will benefit, too.

Effects of Caregiving on Health and Well Being

The combination of loss, prolonged stress, the physical demands of caregiving, and the biological vulnerabilities that come with age place you at risk for significant health problems as well. Caregivers report problems attending to their own health and well-being while managing caregiving responsibilities.

• Sleep Deprivation

• Poor Eating Habits

• Failure To Exercise

Get The Help You Need!

• Life Threatening Emergency - Need Help Now?

  • Call 911or Go To The Emergency Room

  
  

• SafeUT - 24/7 -The SafeUT - Crisis counselors are available 24 hours, 7 days a week, 365 days a year; offering students, parents/guardians, and educators professional and confidential help at no cost. Support is immediate and confidential, and as easy as reaching for your phone and sending that first message.

  • Call (833) 372-3388 or (801) 587-3000

  • https://safeut.org

    
    

• Utah Warm Line - Provides a listening ear to Utah residents dealing with personal struggles. Callers get connected to certified peer support specialists. Warm line works closely with Utah Crisis Line and M.C.O.T. - Mobile Crisis Outreach Teams.

  • Call (801) 587-1055

  • Every Day - 8:00 - 11:00pm

  • https://www.warmline.org/directory/utah-warm-line/

• Crisis Text Line - Helps provide resources and fine support nearby

  • Text: HOME to 741741

  • https://www.crisistextline.org

• Crisis Line - Speak with a certified crisis worker

  • Call or Text 988

  • https://988lifeline.org

  • Call (801) 587-3000

  • https://healthcare.utah.edu/hmhi

• National Suicide & Crisis Hotline - 24 Hour - Receive specialized, individualized support from certified crisis workers trained in suicide prevention, de-escalation, and stabilization. Get connected to mental health resources. Has an option to be directed a Spanish crisis line. They work closely with the Mobile Crisis Outreach Teams (M.C.O.T.) to provide in-person support and crisis intervention.

  • Call or Text 988

  • https://988lifeline.org