Caregivers & High Support Needs
Every voice matters. Every life has dignity. Autistic people and their caregivers deserve to be seen, heard, and supported.
Supporting Autistic Individuals with High Support Needs & Their Caregivers
Rooted in lived experience. Grounded in clinical expertise.
As a therapist specializing in evaluations that focus on autism and ADHD, my work is deeply informed by both my personal journey and a longstanding professional commitment to supporting neurodivergent individuals, to include those with high support needs, across their lifespan.
In 2009, my personal and professional paths converged when my daughter was diagnosed with autism before her third birthday. She was later identified as having high support needs, moderate intellectual disability, and ADHD. Like many families, we faced grief over unspoken expectations and the challenge of navigating confusing, inaccessible systems of care.
We immersed ourselves in every available therapy such as speech, OT, PT, music, and art, while finding strength in research and support networks. One of my most profound lessons came from watching my daughter communicate through music. Long before she spoke, she could sing full songs and convey deep emotions through melody, reshaping my understanding of communication, regulation, and connection, especially for autistic individuals who communicate differently.
These experiences now shape my clinical approach:
I provide trauma-informed, neurodiversity-affirming evaluations that center accessibility, dignity, and collaboration. My reports are written to be meaningful to families, not just professionals, helping caregivers make sense of even the most complex diagnostic profiles. Families deserve clear, useful information, not alienating jargon.
My daughter’s journey exposed systemic inequities: she was often the only autistic girl in her class, her support needs misunderstood, and her care needs unmet. She endured multiple crises, including psychiatric hospitalizations and repeated emergency responses, while in systems that are unprepared to support autistic individuals with high support needs. In one hospital stay, staff admitted they had no autism training; her distress was met not with communication or sensory support, but with restraint.
These dehumanizing experiences became a turning point for me, as it fuels my mission to ensure other families do not feel invisible, blamed, or alone.
Since 2019, I have provided affirming therapy and diagnostic evaluations via telehealth across New York, New Jersey, and Florida. While I serve neurodivergent clients across the spectrum, I am especially dedicated to:
• Families navigating crises, special education, or residential placement
• Caregivers who feel unseen or unsupported by traditional services
• Clients from marginalized communities, including BIPOC and LGBTQ+ individuals
My work is grounded in the Therapeutic Assessment model, which emphasizes collaboration, curiosity, and compassion. I also consult with clinicians, both neurodivergent and neurotypical, on affirming assessment practices, differential diagnosis, and systemic advocacy, and I offer pro bono and sliding-scale evaluations, when possible, to reduce barriers to care.
Ongoing collaboration with psychologists, masters level clinicians, psychiatrists, and nurse practitioners helps me remain ethically grounded, culturally responsive, and informed by current research, while always honoring lived experience.
This work is more than clinical to me. It is personal. It is advocacy. It is about building a better future for my daughter, and for all those like her who deserve to be seen in their full humanity.
Caregiver Roadmap: Supporting Autistic Individuals with High Support Needs
You don’t have to have it all figured out. One step at a time, with support along the way.
Step 2: Assessment & Understanding
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“We want clarity, not labels—we want to understand.”
Pursue a neurodiversity-affirming diagnostic evaluation (autism, ADHD, co-occurring needs)
Ask for collaborative, trauma-informed assessment practices
Learn to interpret reports and psychometric tools in everyday language
Tip: Ask providers if they explain results in ways that empower—not overwhelm—families.
Step 3: Building the Support Team
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“We can’t do this alone—and we shouldn’t have to.”
Identify trusted clinicians: speech, OT, mental health, medical, and behavioral supports
Connect with other caregivers (support groups, online communities, local coalitions)
Learn about and apply for developmental disability services in your state (e.g., OPWDD in NY, DDS in NJ, APD in FL)
Tip: Keep a simple binder or digital folder with contact info, reports, and key documents.
Step 4: Navigating Systems of Care
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“How do we make sure our child gets what they need?”
Advocate in educational settings (IEPs, functional behavior assessments, 1:1 support)
Understand your rights under IDEA, ADA, and state-specific protections
Explore Medicaid waivers, respite care, and long-term planning options
Tip: You are allowed to ask questions. You are allowed to say, “That doesn’t feel right.”
Step 5: Crisis & Safety Planning
(Tap for Resource)
“We need a plan for the hard moments.”
Create a personalized crisis plan (who to call, what calms them, what to avoid)
Identify autism-informed crisis alternatives (mobile crisis, peer respite, behavioral stabilization)
Teach emergency responders about your loved one using one-page profiles or alert cards
Tip: If you’re not getting respectful care during a crisis, you’re not alone. Keep advocating.
Step 6: Sustainable Care & Family Wellbeing
“We’re in this for the long haul—how do we stay grounded?”
Find mental health support for yourself or other family members
Rebuild routines and rituals that nourish joy, connection, and rest
Plan for transitions (adolescence, adulthood, guardianship, housing)
Continue learning from autistic voices—especially those with high support needs
Tip: Your wellbeing matters. Caregiving is courageous—but you deserve care, too.
Every step you take is an act of love. There’s no one “right” way—only the way that works for your family.
Step 1: Recognition & Reflection
“Something’s different—and we need support.”
Notice differences in communication, sensory regulation, development, or behaviors
Begin reflecting on your child or loved one’s needs without rushing to pathologize
Seek out affirming resources that validate neurodivergence (books, podcasts, community)
Tip: Your intuition matters. You don’t need to wait for a crisis to explore answers.
Services/Supports & How to Maneuver Them
Mental Health System
Offers:
Outpatient therapy (individual, group, family)
Psychiatry and medication management
Crisis stabilization and inpatient care
Case management
Intensive outpatient programs (IOP) and partial hospitalization programs (PHP)
Mobile crisis teams and respite care
Developmental Disabilities Services
(often state-run under OPWDD in NY, DDS in NJ, APD in FL, etc.)
Offers:
Eligibility evaluations for intellectual/developmental disabilities
Service coordination (support brokers, care managers)
Residential programs (group homes, supervised apartments)
In-home support services (behavioral aides, DSPs)
Respite, day programs, and supported employment
Waiver services (e.g., Medicaid HCBS waivers)
Educational System (Special Education/IDEA)
Offers:
IEP evaluations and plans
Related services: OT, PT, speech, counseling
Accommodations and modifications
Behavioral supports and Functional Behavior Assessments (FBA/BIPs)
Transition planning (age 14–21+)
School-based mental health services
Medical System
Offers:
Primary care and referrals to specialists (neurology, psychiatry, developmental pediatrics)
Diagnostic testing
Medication monitoring
Care coordination (in some integrated practices)
Durable medical equipment and adaptive technology
Challenges in Systems of Care
Fragmentation: Services often don’t communicate across systems.
Eligibility barriers: Families may fall through the cracks when someone doesn’t qualify.
Waitlists and delays are common.
Inequity: Race, language, immigration status, and disability can affect access.
Public vs. Private Schools vs. Residential Education Settings: Key Differences in Services and Supports
Public Schools: Pros
Free access to mandated special education and accommodations
Clear legal rights and protections for students with disabilities
Typically more diverse environments
Structured path to dispute resolution (due process hearings, etc.)
Public Schools: Inclusion Classes
Inclusion is a legal requirement under IDEA: students must be educated in the Least Restrictive Environment (LRE).
Students with IEPs are placed with non-disabled peers as much as is appropriate.
Models include:
Push-in services: Related services happen in the general ed classroom.
Co-teaching (ICT): Special and general educators share the classroom.
Pull-out: Students leave the classroom for specialized instruction or therapy.
Barriers: Staff shortages, lack of training, or rigid curriculum can limit meaningful inclusion.
Private Schools: Pros
Smaller class sizes and more individualized attention
Flexibility in curriculum and teaching style
Some specialize in specific learning or developmental needs
Private Schools: Inclusion Classes
Inclusion is not legally required.
Some schools are highly inclusive and use Universal Design for Learning (UDL) or neurodiversity-affirming models.
Others may:
Refuse admission based on disability.
Provide segregated instruction or pull-out only.
Lack IEP/504 support entirely.
Specialized Private Schools
Some private schools are designed specifically for neurodivergent students (e.g., autism, ADHD, dyslexia). These schools often:
Offer sensory-friendly environments
Provide speech/OT onsite (sometimes billed separately)
Use specialized teaching methods (e.g., Orton-Gillingham for dyslexia)
Charge high tuition, though some accept state funding or scholarships
Public Schools: Challenges
Overburdened staff and limited resources
High student-to-support-staff ratios
Bureaucratic delays in evaluations and services
Private Schools: Challenges
No legal obligation to serve students with disabilities
Cost can be prohibitive
May lack trained special education staff
Fewer rights or recourse if needs aren’t met
IEP Services in a Residential Setting
These services are delivered directly or indirectly and are often more intensive than what is typically provided in a public day school setting.
Academic Instruction
Small-group or 1:1 instruction with modified curriculum
Special education support in all academic domains (ELA, math, science, etc.)
Access to adapted materials (audio, visual supports, AAC, etc.)
Related Services
Speech-Language Therapy: Social communication, pragmatic language, receptive/expressive skills
Occupational Therapy: Sensory regulation, fine motor skills, executive functioning
Physical Therapy: Gross motor development and physical access
Counseling or Psychological Services: Individual or group therapy, trauma-informed supports, CBT/DBT
Behavioral Support Services: BCBA consultation, behavior intervention planning, crisis planning
Social Work Services: Case coordination, support for transitions back to home or community
Vocational/Transition Services: Life skills training, job coaching, prevocational internships
Residential-Specific Supports
24/7 therapeutic milieu with behavior management
Support staff trained in de-escalation, trauma-informed care, and relationship-based models
Evening/weekend structured programming (group therapy, ADLs, leisure skills)
Coordination between educational and residential staff to ensure consistency
IEP Goals for a Residential Setting
IEP goals must be measurable, individualized, and address the student’s academic, behavioral, social-emotional, and functional needs.
Academic Goals
Executive Functioning Goals
Communication Goals
Social-Emotional & Mental Health Goals
Behavioral Goals
Daily Living/Independent Functioning Goals
Transition Goals (age 14+)
Additional IEP Considerations in Residential Placements
Extended School Year (ESY): Often needed to prevent regression
Parent Counseling and Training: Required service under IDEA if family needs support to carry over skills at home
Crisis Plans: Individualized safety/crisis intervention plans
Functional Behavior Assessment (FBA) and Behavior Intervention Plan (BIP)
Coordination with Home District: Required for tuition payment, placement reviews, and eventual transition planning
What Happens Once an Individual Ages Out of The School System at Age 21?
Developmental Disabilities Services (DD Services)
What they offer:
Care coordination/supports brokerage
Residential supports (group homes, supported apartments)
Day habilitation and community habilitation
Employment supports (job coaching, pre-vocational training)
Respite and behavioral supports
Access steps:
Apply through your state’s developmental disabilities office (e.g., OPWDD in NY, DDS in NJ, APD in FL).
Must meet eligibility criteria (often based on IQ, adaptive functioning, autism, etc.).
Submit psychological and medical documentation; may require new adult evaluations.
Enroll in Medicaid (even if financially supported by family), as many services are Medicaid waiver-based.
Adult Mental Health System
What they offer:
Case management
Outpatient and psychiatric care
Community-based support programs (ACT teams, peer support, wellness centers)
Crisis response, inpatient care, or transitional housing
Access steps:
Contact local Department of Mental Health or behavioral health provider network.
Use community health centers, mobile crisis units, or mental health clinics.
If your child was in children’s mental health services, ask for a transition plan to adult services before age 21.
Medicaid and Health Insurance
What they offer:
Coverage for medical, psychiatric, therapy, and home care services
Personal care aides (PCAs), durable medical equipment, transportation
Access steps:
Apply for Medicaid through the state. Disability may qualify the young adult regardless of parental income.
Can be paired with SSI to maintain eligibility.
Consider Health Home Care Management if available in your state.
Housing Supports
What they offer:
Group homes, supervised apartments
Supported Independent Living (SIL) programs
Section 8 or supportive housing
Access steps:
Work through DD services or local housing authorities.
Apply for waiting lists early—some have long delays.
Explore state or local transition coordinators who assist with housing navigation.
Vocational & Employment Services
What they offer:
Job assessments, coaching, internships
On-the-job training
Assistance with applications, accommodations, and career readiness
Access steps:
Contact your state’s Vocational Rehabilitation (VR) agency (e.g., ACCES-VR in NY, DVR in NJ).
Apply around age 17–19 so services can start as school ends.
Connect with local job placement programs or nonprofit disability employment agencies.
Social Security Income (SSI/SSDI)
What they offer:
Monthly cash assistance
Automatic access to Medicaid (for SSI)
Pathway to long-term supports and housing programs
Access steps:
Apply at age 18 or older through the Social Security Administration.
Child’s income is considered separately from parents’ once they turn 18.
Submit records of diagnosis, adaptive functioning, and school-based services.
Adult Transition Planning (Ideally Begins in School)
What it should include:
Person-centered planning starting by age 14 (IDEA requirement)
Referral to adult agencies by age 18–21
Vocational assessments and real-life skill building
Family training and support around navigating adult systems
Access steps:
Ensure IEP transition goals include agency referrals and skill-building.
Meet with a transition coordinator at school or through local DD/mental health services.
Pro Tips for Accessing Adult Services
Start early: Begin applications, evaluations, and documentation updates by age 16–18.
Keep copies of school evaluations, IEPs, and any clinical reports that document diagnosis and functional needs.
Build a team: Connect with service coordinators, peer navigators, or advocacy organizations (e.g., Parent Centers, The Arc, Autism Society).
Ask for warm handoffs: Children’s services should not “drop off”—demand a transition meeting or adult referral plan.
Medical vs. School-Based Evaluations: Key Differences
Medical Evaluation
Purpose: To diagnose conditions (e.g., autism, ADHD, anxiety, learning disorders) and guide clinical treatment.
Conducted by: Licensed professionals (psychologists, developmental pediatricians, psychiatrists, neurologists, LCSWs).
Legal Framework: Guided by DSM-5/ICD-10 and clinical best practices, not IDEA.
Diagnosis: Can provide formal diagnoses (e.g., Autism Spectrum Disorder, ADHD).
Cost: May be covered by insurance or require out-of-pocket payment.
Timeline: Varies; can take weeks or months depending on provider availability.
Scope: Comprehensive and individualized, often addressing emotional, developmental, and sensory functioning.
Services Following Evaluation:
May lead to medical treatment or outpatient therapies.
Can be used to support 504 plans or private school accommodations.
Setting: Clinical offices, hospitals, private practices, or via telehealth.
Report Ownership: Families own the report and decide how and with whom it’s shared.
School-Based Evaluation
Purpose: To determine eligibility for special education or 504 accommodations within the school system.
Conducted by: School psychologists, special educators, speech/language pathologists, and OTs within the district.
Legal Framework: Governed by IDEA and Section 504; timelines and processes are federally and state regulated.
Diagnosis: Does not provide medical diagnoses; may classify under educational labels (e.g., Autism, Other Health Impairment).
Cost: Free to families.
Timeline: Legally mandated (typically within 60 days of consent; varies by state).
Scope: Focused on how the student’s challenges affect educational performance.
Services Following Evaluation:
May result in an IEP or 504 Plan that includes services like speech, OT, counseling, and classroom accommodations.
Setting: Conducted within the school environment, often with classroom observations.
Report Ownership: The school district owns the report; families receive a copy but do not control the wording.
Important Notes
A medical diagnosis does not guarantee school services unless there is a documented educational impact.
A student may receive school-based supports without a formal diagnosis, based on observed need.
Ideally, families pursue both evaluations for a full picture: one for diagnosis/treatment, one for school-based support.
What many parents and caregivers of autistic individuals with high support needs often carry in silence.
These aren’t always spoken out loud but they’re deeply felt and they deserve compassionate spaces.
The Hardest Things to Talk About (and Trust Others With)
1. Fear for the Future
“What happens to my child when I’m gone?”
It’s one of the most painful, persistent fears yet few people outside the community know how to hold it without rushing to minimize it.
2. Guilt and Grief
“I love my child completely, and still… I grieve what I imagined life might look like.”
Parents often carry silent guilt for grieving milestones missed, or for feeling exhausted, overwhelmed, or unsure. This grief isn’t a failure, it’s human.
3. Daily Safety Concerns
“I’m always alert, what if they bolt? Hurt themselves? Can’t communicate in an emergency?”
This kind of hypervigilance is often misunderstood by outsiders as anxiety or overprotectiveness but it comes from lived experience.
4. Judgment from Professionals
“Will this provider judge me? Blame me?”
Too many parents have been blamed for their child’s behaviors, misunderstood by school teams, or dismissed by clinicians. This breaks trust and keeps families quiet when they need the most support.
5. Mental Health & Burnout
“I feel depleted but if I say that out loud, will people think I don’t love my child?”
There’s often stigma around caregiver burnout, depression, or trauma, especially for mothers, single parents, or families of color.
6. Sibling Strain
“How do I meet the needs of my other children too?”
Siblings often feel overlooked, and parents may carry guilt about the emotional or logistical impact on the family unit.
7. Resentment or Anger
“I didn’t ask for this and some days, it’s really, really hard.”
These feelings are normal and valid, but often feel too taboo to say out loud without fear of judgment.
8. Desire for Connection but Lack of Time or Energy
“Friendships have faded. I miss feeling like myself.”
Many caregivers become isolated. There’s often no space to speak about loneliness and lost identity.
9. Disappointment in the Systems Meant to Help
“The school. The hospital. The crisis team. They said they’d help and then they didn’t.”
The betrayal of broken systems is deeply painful and frequently retraumatizing. It deserves acknowledgment, not blame.
10. Love That Doesn’t Always Look Like Joy
“I love my child with my whole being. But love isn’t always easy or Instagram-ready.”
This love is real, fierce, and constant even when it’s complicated by exhaustion, fear, or grief.
You are not alone if you’ve thought or felt any of these. Speaking them aloud doesn’t make you a bad parent it makes you a human one.
Finding the right space safe, affirming, nonjudgmental can make all the difference.