When Mental Health and Developmental Disability Overlap

Mental Health Awareness Month typically focuses on broad themes like emotional wellness, self-care, and therapy. However, for families in the disability community, mental health challenges are often far more complex.

If your loved one has an intellectual or developmental disability (IDD/DD), or a diagnosis such as 22q11.2 Deletion Syndrome, which can present very differently from person to person, you may already know:

• Mental health symptoms don’t always look typical
• It can be difficult to find the right providers
• Behaviors are sometimes misunderstood or dismissed
• And your own mental health as a caregiver can quietly take a back seat

This month is not just about awareness; it’s about understanding, access, and support that actually fit your reality.

When Mental Health Looks Different

Mental health challenges in individuals with IDD/DD often show up in ways that don’t match what people expect.

Instead of someone saying “I feel anxious” or “I’m depressed,” families may notice:

• Increased irritability or aggression
• Withdrawal or loss of skills
• Changes in sleep or appetite
• Refusal behaviors
• Increased dependence or regression

For individuals with 22q11.2 Deletion Syndrome, mental health can be a particularly important part of the picture. There is a higher likelihood of conditions like anxiety, ADHD, mood disorders, and, in some cases, more complex psychiatric needs over time.

One of the biggest challenges is that these changes are often misunderstood.

When Symptoms Are Missed: Understanding Diagnostic Overshadowing

Families are often told that changes in behavior are “just part of the disability.” But that’s not always the full story.

Diagnostic overshadowing is a well-documented problem where a person’s mental health symptoms are mistakenly attributed to their existing disability instead of being recognized as a distinct and treatable condition.

This can look like:

• Anxiety being labeled as “noncompliance”
• Depression being seen as “low motivation”
• Emotional distress showing up as behavior challenges

When this happens, individuals may not receive the support they need, not because help doesn’t exist, but because the need isn’t fully recognized.

Barriers Families May Encounter

Families navigating mental health alongside IDD/DD often face challenges that go beyond diagnosis and treatment.

Fragmented systems
Medical providers, therapists, schools, and support services don’t always communicate clearly with one another. Families often find themselves coordinating care across multiple systems.

Stigma and misunderstanding
Individuals with IDD/DD may experience biased assumptions or unequal treatment, both socially and within healthcare systems. Over time, this can contribute to isolation, low self-esteem, and increased anxiety or depression.

Limited access to appropriate care
There is still a misconception that individuals with IDD do not benefit from therapy, especially if they have lower measured cognitive abilities. In reality, therapy can be highly effective when it is adapted to the individual. A person’s IQ score alone should never determine whether they are offered mental health support.

What to Look for in Mental Health Support

Finding the right provider may take time, but there are important signs that a therapist or provider is a good fit.

Look for professionals who:

• Have experience with IDD/DD or dual diagnosis
• Adapt communication and interventions (visual supports, simplified language, caregiver involvement)
• Understand that behavior is a form of communication
• Who are willing to collaborate with other members of your team

Progress may look different than traditional therapy, but it is still meaningful. Small gains in communication, regulation, or daily functioning are important indicators of improved mental health.

Organizations like The National Association for the Dually Diagnosed and The Arc of the United States can be helpful starting points for finding resources, supports and education.

What Families Can Do When Concerns Arise

If something feels different, trust that instinct. You know your loved one best.

• Pay attention to changes from baseline. Shifts in emotions, thinking, physical health, or daily functioning may signal a mental health need.
• Track what you’re seeing. Noting patterns, timing, and triggers can help providers better understand what’s happening.
• Seek information from qualified professionals, ideally those familiar with 22q11.2 Deletion Syndrome or dual diagnosis.
• Don’t wait to ask for help. Early evaluation and treatment can improve long-term outcomes. Many mental health conditions are ongoing but manageable with the right supports.
• Stay consistent with follow-up care. Regular appointments allow for adjustments and ongoing support as needs change.

Knowing Where to Turn in a Mental Health Crisis

Sometimes mental health needs become urgent. In those moments, knowing where to go ahead of time can make all the difference.

Every community has a local mental health authority or crisis provider that offers:

• Crisis assessments
• Urgent mental health support
• Referrals to ongoing services
• Mobile crisis outreach in some areas

If you’re not sure who serves your area, you can:

• Search “Local Mental Health Authority” + your county name
• Visit your state’s Health and Human Services website
• Use the treatment locator from the Substance Abuse and Mental Health Services Administration

You can also call 988, the Suicide and Crisis Lifeline, for immediate support and guidance.

If You Need to Call 911

In some situations, emergency services may be necessary. If you need to call 911, how you communicate can help shape the response.

When calling:

• Clearly state that this is a mental health crisis, not a crime
• Request a Crisis Intervention Team (CIT)–trained officer or mental health crisis unit, if available
• Share that your loved one has a disability (such as IDD/DD or 22q11.2 Deletion Syndrome)
• Briefly describe communication needs, sensory sensitivities, or known triggers
• Ask responders to approach calmly and avoid escalation when possible

If you are able, stay on the line and continue sharing helpful information until support arrives.

Preparing this information ahead of time, even as a few notes in your phone, can make it easier to communicate clearly during a stressful moment.

Organizations like the National Alliance on Mental Illness offer family support groups and education that can be a helpful starting point.

You Don’t Have to Figure This Out Alone

Mental health in the disability community deserves more than awareness; it deserves recognition, adaptation, and access. Whether you are supporting a child with 22q, navigating dual diagnosis, or carrying the weight as a caregiver, your experience is real, and support is possible. If you’re not sure where to start, start small. Ask a question. Track a change. Reach out for guidance. At CaringTide, we come alongside families to help make sense of what you’re seeing, explore options, and build a plan that fits your loved one and your life.