Autism and the Services Cliff

When Your Autistic Child Turns 18 and the Services Disappear

Facing Independence, Fragmented Systems, and Unseen Challenges

When your child turns 18, most parents celebrate a milestone: the legal arrival of adulthood. But for many parents of autistic children, that birthday can feel less like a celebration and more like a cliff’s edge. Note that 18 may be a key number when it comes to certain resources, but finishing high school may be the key transition period…the quiet disappearance of supports that scaffolded your child’s daily life up until that point.

I’ve now walked that edge myself. My stepdaughter turned 18 two years ago. One day, she was in a regular high school program but with wrap-around supports: structured daily schedules, transition planning meetings that included us, the parents, and a Ready-Room, a supportive space for individuals with neurodivergent needs where she could decompress, reset, and receive one-on-one guidance when the academic or social world felt overwhelming. It wasn’t just a room. It was a lifeline. It was where she could go when classrooms felt too loud, or when assignments piled up faster than her ability to process them. The staff who ran it knew her well, understood her needs, and created an environment where she could succeed. And don’t get me wrong, behind those supports, we were there too, advocating for her needs and staying deeply involved in her schooling and in navigating the maze of social resources.

And then, almost overnight, it was gone. The services that had guided her through adolescence were gone. And new ones? They weren’t waiting for us. Turning 18 or graduating high school didn’t mean her needs changed. She didn’t wake up that morning suddenly more able to manage transitions, organize daily life, or regulate anxiety without support. Yet, the systems around her acted as if she had. This “services cliff” is well-documented in autism research (Turcotte et al., 2016; Anderson et al., 2018; Hendren, 2021), yet it still catches families unprepared; for parents, the role of advocate doesn’t end, it intensifies. We argue, we explain, we translate her needs into the language of systems that were not built with her in mind. And all the while, we balance that delicate line between empowering her to grow and shielding her from a world that often misunderstands or overlooks her. The gap between pediatric and adult services is not a small crack, it’s a chasm. And it’s not just about healthcare or social services. It’s about a sudden change in how institutions treat our children, and by extension, us as parents. 

As both a caregiver and an academic administrator, I see this problem from two vantage points. At home, I watch my stepdaughter navigate the daily realities of young adulthood, trying to build independence while still relying on consistent support. At work, in the university context, I’ve met students with similar profiles: neurodivergent young adults who are bright, capable, and eager to learn, but who struggle with executive functioning, social stressors, or the overwhelming independence suddenly expected of them. We, as administrators, are bound by ethical and legal boundaries that recognize the student as an adult. We cannot engage with parents unless the student explicitly grants us permission. And yet, many of these students still need the kind of scaffolding that high schools provided, and that universities, and the broader adult services system, rarely do.

Falling Through the Cracks: When Autistic Young Adults Are “Too Able” for Support, Yet Not Supported Enough

For families like ours, the transition is jarring. The safety net is cut away just as our children are stepping into the most demanding period of their lives: pursuing further education, job training, or employment; navigating social networks; learning to live with more autonomy. Parents are left trying to fill in the gaps, often without training, resources, or respite.

And for autistic adults who don’t qualify as “legally dependent,” not meeting the criteria for formal dependency or guardianship, yet still needing consistent support to manage everyday life, the landscape can feel even harsher. They are often considered too “high functioning” to access developmental disability supports, yet their challenges are significant enough to create real barriers to thriving independently (Nicholas et al., 2015; McQuaid et al., 2021). This systemic in-between leaves families carrying much of the load informally, reminding, coaching, advocating, often without recognition or support.

There’s a personal layer here for me, too. I am a solo parent now - my husband, her father, died when she was still in her teens. That grief runs alongside the frustration of navigating a fragmented system. I won’t dwell on it in this post because this isn’t a story about loss, it’s about the structural absence that parents encounter when services vanish, and the paperwork, the decisions, the emotional load of advocating in systems that weren’t designed for those who live in-between.  Still, I can’t deny that being alone in this role makes the silence of that gap even louder.

This gap is not theoretical. A national needs assessment by the Autism Alliance of Canada found that autistic adults often face significant barriers to accessing mental health and community-based social services (Autism Alliance Canada, 2024). These barriers include eligibility requirements that many do not meet, leaving them without the support they need. The report emphasizes the need for expanded adult-focused autism services, particularly in mental health and employment supports, alongside better financial assistance and greater social support networks (Autism Alliance Canada, 2024).

In Canada, the supports available often hinge on sharp eligibility lines. For example, access to the Disability Tax Credit or provincial disability benefits usually requires extensive documentation and proof of “marked restriction”, language that excludes many autistic adults who can attend school or work part-time but still need structured support in daily living. Guardianship is another threshold: unless a young adult is declared legally incapable, parents or caregivers cannot step in to manage health, education, or financial decisions. Moreover, the legal frameworks surrounding guardianship and dependency are often ill-suited to the needs of autistic adults. As noted by PooranLaw, guardianship is typically considered a last resort and is not easily obtained unless the individual is deemed incapable of managing their affairs. This creates a situation where many autistic adults are left without the necessary legal support, despite requiring assistance with daily living and decision-making (Pooran et al., 2021).

Yet many families live in the middle ground, where their child is not “incapacitated enough” to qualify for guardianship but not “independent enough” to thrive without ongoing scaffolding. It is in this liminal space, too able to qualify yet not supported enough to succeed, that both autistic adults and their families often feel the deepest strain.

Where Science and Advocacy Meet: What Needs to Change

From a research perspective, we know transitions are a vulnerable period for mental health, whether we’re talking about starting university, moving to a new city, or aging into new stages of life (Schlossberg, 2011). Moving from one life stage to another depends on available supports, coping resources, and systems that help people adapt. When these are absent, the transition falters. For autistic individuals, these vulnerabilities are compounded by systemic service discontinuities, under-resourced adult programs, and the complex interplay between independence and support needs.

From a parent’s perspective, the emotional reality is more blunt: you feel like you’re being asked to step back at the exact moment your child needs you most. You try to prepare them for self-advocacy, for responsibility, for life, but this transition takes time, if it happens at all, especially for individuals deemed “not sufficiently incapacitated”.

For autistic young adults, three changes would make an immediate difference:

1. Bridging Programs that extend high school-style supports into early adulthood. Services should extend beyond age 18, with overlapping pediatric and adult supports to avoid a sudden drop-off.

2. Flexible Privacy and Guardianship Protocols that honour autonomy while recognizing ongoing support needs. Institutions, including colleges and universities, should develop consent processes that empower young adults to include trusted family members in communication where appropriate.

3. Centralized Information Maps so families don’t waste precious energy trying to locate fragmented resources. Families need clear, centralized guides to available adult services, updated regularly and distributed well before the transition date. (A list of such resources will be provided in a future blog post)

   
   

This isn’t about coddling young adults or undermining their autonomy, it’s about acknowledging that for many neurodivergent individuals, independence doesn’t arrive on a single birthday. It’s a process, and the systems meant to support them need to reflect that reality.

Until then, families like mine will keep building bridges where the system leaves gaps...because stepping off the edge isn’t an option.

-- Anne TM Konkle, PhD

References

Anderson C, Lupfer A, Shattuck PT. Barriers to Receipt of Services for Young Adults with Autism. Pediatrics. 2018 Apr;141(Suppl 4): S300-S305. doi: 10.1542/peds.2016-4300G. PMID: 29610411.

Autism Alliance of Canada. Autistic adults in focus: Understanding mental health and social support needs and barriers (Phase 2 of the Canadian Autistic Adult Needs Assessment Project). Autism Alliance of Canada. 2024 Oct 17; Retrieved from Autism Alliance of Canada website (https://autismalliance.ca/).

Hendren RL. Editorial: Addressing the "Cliff" for Adults with Autism Spectrum Disorder. Journal of the American Academy of Child and Adolescent Psychiatry. 2021 Aug;60(8):946-947. doi: 10.1016/j.jaac.2021.01.015. Epub 2021 Feb 1.

McQuaid, G. A., Pelphrey, K. A., Bookheimer, S. Y., Dapretto, M., Webb, S. J., Bernier, R. A., McPartland, J. C., Van Horn, J. D., & Wallace, G. L. (2021). The gap between IQ and adaptive functioning in autism spectrum disorder: Disentangling diagnostic and sex differences. Autism, 25(6), 1565-1579. https://doi.org/10.1177/1362361321995620 

Nicholas DB, Attridge M, Zwaigenbaum L, Clarke M. Vocational support approaches in autism spectrum disorder: a synthesis review of the literature. Autism. 2015 Feb;19(2):235-45. doi: 10.1177/1362361313516548. Epub 2014 Jan 21.

Pooran B, Dickson S, Rahman S.  Guardianship as a Last Resort.  Estates, Trusts & Pensions Journal.  2021 Feb; 239-255.

Schlossberg NK. The Challenge of Change: The Transition Model and Its Application.  Journal of Employment Counseling, 2011 48(4). https://doi.org/10.1002/j.2161-1920.2011.tb01102.x

Turcotte P, Mathew M, Shea LL, Brusilovskiy E, Nonnemacher SL. Service Needs Across the Lifespan for Individuals with Autism. J Autism and Developmental Disorders. 2016 Jul; 46(7):2480-2489. doi: 10.1007/s10803-016-2787-4. PMID: 27084080.