The Sibling Silent Crisis
- Aug 10
- 8 min read
Saaid Radwan is a Behavior Analyst, Neurodiversity and Family Consultant, and CPD Certified Trainer with 20+ years of international experience across the UAE, MENA, Europe, and Central Asia. He specializes in ABA, communication support, emotional regulation, and family-centered care, advocating inclusive, lifelong development.
In my twenty-five years of walking alongside families across six continents, I have sat in living rooms from Dubai to Tashkent, from Paris to Kuala Lumpur, and witnessed the same scene unfold, a mother exhausted from managing meltdowns, a father navigating therapy schedules, and a child with autism receiving every ounce of the family's emotional, financial, and logistical energy. But there is almost always someone else in that room, quiet, adaptable, and invisible. The sibling.
We have built an entire industry around autism intervention. We train BCBAs, speech therapists, occupational therapists, and special educators. We fund parent support groups, respite programs, and awareness campaigns. But we have forgotten the brothers and sisters who grow up in the same home, breathe the same air, and absorb the same stress, often without a single professional ever asking them how they are doing.
This is the Sibling Silent Crisis and it is time we faced it.
The invisible data: What the numbers actually say
For decades, sibling research was treated as an afterthought, a footnote in studies about parental stress or child outcomes. But the data that does exist is impossible to ignore.
Research led by Orsmond and Seltzer found that 36% of adolescent siblings of children with autism reported depressive symptoms at or above the clinical cutoff on standardized measures, a rate that demands attention, not dismissal. Even more striking, the gender divide was severe, over half (51.5%) of sisters scored at or above the clinical cutoff for depression, compared to only 5.9% of brothers.
Anxiety tells a different but equally urgent story. A large-scale study using the Simons Foundation Simplex Collection dataset, spanning 1,755 siblings, found that while siblings as a whole did not show elevated clinical anxiety, male siblings in middle childhood (ages 6 to 11) were twice as likely as expected to fall above the borderline cutoff for anxiety problems. This is the age when children begin to truly understand what autism means for their family and for their own social identity.
A systematic review of fifteen qualitative studies encompassing 164 typically developing siblings found that the experience of growing up with an autistic brother or sister shapes self-identity, personal development, and emotional coping in profound ways, both positive and negative. Many siblings described deep empathy and pride. But many also described loneliness, parentification, and a grief that has no name.
True stories: The faces behind the silence
Names and identifying details have been changed to protect privacy. These composites are drawn from real cases and research narratives.
Leila, 14, Casablanca, Morocco
Leila was nine when her younger brother Omar was diagnosed. By eleven, she could de-escalate a sensory meltdown better than most therapists. She knew which playlist calmed him, which textures he could tolerate, and exactly how to rearrange the living room after he overturned furniture. Her parents called her "the little mother." What they did not see was that Leila stopped inviting friends over at age twelve. She could not explain why, only that she felt responsible for making sure Omar was okay before she could think about herself. When I met her, she was experiencing panic attacks before school exams. "If I fail," she told me, "who will take care of Omar when my parents get old?"
Marcus, 9, Sarawak, Malaysia
Marcus's brother has autism with significant hyperactivity and noncompliance, the very behaviors that research shows most strongly predict caregiver burden across the entire family system. Marcus's parents, overwhelmed and working hourly jobs, began relying on him to supervise his brother during homework time. Marcus started bedwetting at age eight, a regression no one connected to stress. His teacher described him as "a mature little man." Maturity, in this case, was parentification wearing a child's face.
Anastasia, 22, Moscow, Russia
Anastasia was twenty when her parents asked her to move back home to help with her teenage brother's transition plan. She had been studying psychology, ironically, to become a therapist. "I love my brother," she said. "But no one ever asked me if I wanted to be his future guardian. They just assumed." Her distress was compounded by guilt, she felt selfish for wanting her own life. Research on adult siblings confirms this pattern. Sibling-focused parentification, where a child adopts caregiving roles typically performed by parents, significantly impacts distress and the quality of family relationships. When social support is low, the distress becomes clinical.
James, 16, London, UK
James's sister has autism and is non-speaking. At school, he never mentions her. When classmates ask if he has siblings, he says "no." The shame is not about her. It is about the exhaustion of explaining, the fear of pity, and the silent resentment that family vacations were canceled, college funds redirected, and every conversation at home revolved around therapy goals. "I feel like a ghost in my own family," he wrote in a journal he shared with me. "And if I complain, I'm the bad guy who doesn't understand."
The ignorance: Why we keep looking away
The Sibling Silent Crisis persists because of three interconnected forms of ignorance, cultural, clinical, and systemic.
Cultural ignorance
In many societies, the sibling is expected to adapt, to sacrifice, to be "the easy one." There is an unspoken contract, the disabled child gets the attention, the typical child gets the responsibility of not adding to the burden. This is especially true in collectivist cultures, where family duty is sacred and individual needs are subordinated. But I have seen it in individualist cultures too, just dressed in different language. "She's so resilient." "He's such a helper." "What a mature young man." These are not compliments. They are diagnoses we fail to make.
Clinical ignorance
Walk into almost any autism center in the world. Count how many intake forms ask about sibling wellbeing. Count how many treatment plans include sibling goals. Count how many BCBAs have been trained to conduct a sibling functional assessment. The answer, in most places, is zero. Our field is built on the principle that behavior is a function of environment, yet we treat the home environment as if it only contains one child. We measure parent stress. We measure child progress. We do not measure sibling depression, anxiety, or parentification. Siblings are often overshadowed at home and overlooked by service providers.
Systemic ignorance
Insurance companies, government funding bodies, and nonprofit organizations design programs around the diagnosed individual. Sibling support groups, where they exist, are typically grassroots, underfunded, and volunteer-run. The Sibling Support Project and Sibshops are remarkable exceptions, but they reach a fraction of the global need. In most countries, there is no policy framework, no diagnostic code, and no funding stream for sibling mental health. We have built a system that treats families as if they are patients with a single presenting issue when, in reality, autism is a family system condition.
Facing the gap: What must change now
The gap between what siblings need and what we provide is not a knowledge gap anymore. The research is clear. The gap is a will gap, a structural gap, a courage gap. Here is how we close it.
For parents: See the child you are not worried about
Your typically developing child is not "fine" just because they are not causing problems. Check in with them, not once, but regularly. Use age-appropriate language to explain autism. Validate their frustration when family plans change. Create one-on-one time that has nothing to do with their sibling's needs. Most importantly, do not make them a co-parent. Household help is appropriate. Emotional caregiving is not. If your nine-year-old knows how to manage a meltdown but does not know how to tell you they are lonely, the balance is wrong.
Research shows that validating siblings' feelings and acknowledging unfair circumstances helps them feel seen, heard, and supported. Even small windows of dedicated time can go a long way.
For therapists: Expand your lens or fail your client
If you are a BCBA, speech therapist, occupational therapist, or psychologist, you must stop treating the diagnosed child as your only client. The family is your client. This means:
Conduct sibling-informed assessments. Ask about sibling stress, sleep, school performance, and social withdrawal during intake and reassessment.
Set sibling-aware treatment goals. Does your behavior intervention plan require the sibling to leave the room, stay quiet, or act as a backup reinforcer? If so, you are extracting a cost from them. Account for it.
Build sibling resilience into your programming. Teach the diagnosed child skills that reduce sibling burden, including turn-taking, tolerating delayed attention, and appropriate play initiation. Every skill you teach your client is a gift you give their sibling.
Refer when needed. Know the signs of parentification, depression, and anxiety in siblings. Have a referral network ready.
For organizations: Design for the whole family system
Autism centers, clinics, schools, and nonprofits must restructure their service models:
Hire sibling coordinators. One staff member whose explicit role is to assess, support, and advocate for siblings.
Create sibling-specific programming. Sibshops, peer mentorship, and psychoeducation groups should be standard, not exceptional.
Measure family-wide outcomes. If your center only tracks the diagnosed child's progress, you are missing half the picture. Add sibling wellbeing metrics to your evaluation framework.
Train staff in family systems theory. ABA is powerful, but it is not enough. Your team needs to understand parentification, diathesis-stress models, and the long-term trajectory of sibling relationships, which can easily exceed six decades, meaning siblings face these issues for even longer than parents.
For policymakers: Recognize siblings as stakeholders
National autism strategies, insurance mandates, and disability funding frameworks must explicitly include sibling support services. This is not a luxury. It is prevention. A sibling who develops clinical depression or drops out of school due to parentification becomes a cost to the system and a tragedy to the family. Early investment in sibling mental health pays dividends across the lifespan.
The deeper truth
There is a narrative we tell in the autism community that awareness leads to acceptance, and acceptance leads to support. But we have been aware of siblings for decades and have not accepted their needs as equal to those of the diagnosed child. We have not supported them with the same urgency, the same funding, or the same professional rigor.
This is not about pity. The siblings I have met are some of the most compassionate, resilient, and insightful people I know. Many go on to become advocates, therapists, and changemakers. But resilience should not be extracted. It should be nurtured.
The sibling relationship is the longest relationship most people will have. It outlasts parents. It predates spouses. For individuals with autism, the sibling is often the bridge to the world when parents are gone. If we want that bridge to be strong, we must stop treating the sibling as an afterthought and start treating them as the stakeholder they have always been.
The silence ends now.
Saaid Radwan, Behavior Analyst and Family Consultant
Saaid Radwan is a Behavior Analyst, Neurodiversity and Family Consultant, and CPD Certified Trainer with over 20 years of international experience across the UAE, MENA, Europe, and Central Asia. He specializes in ABA, communication support, emotional regulation, and family-centered care across the lifespan. Saaid is passionate about inclusive education, early intervention, and empowering families and professionals through practical, compassionate strategies. His work bridges evidence-based practice with real-world impact.
