The Services Cliff: Autistic Young People and the Move to Adult Health Care

For many autistic young people, growing up means stepping off a cliff rather than being handed on. Research from the United States, England, Canada, Sweden and across Europe points the same way: few autistic teenagers are prepared for adult health care, services fall away as school ends, and many who still need care leave children’s services with nowhere specific to go.

It is the young person who has seen the same children’s team for years and then gets a letter at 17 or 18 saying their care is ending. It is the parent who has coordinated everything for a decade and is now told that their child, legally an adult, must manage it alone, in a system that has never met them. Sometimes an adult service is ready. Often what waits is a GP, a waiting list or nothing in particular. The need has not changed, only the birthday. Families have a name for this: falling off a cliff^[1].

Fewer than one in ten autistic teenagers are prepared for adult health care

Good preparation is well defined. US clinical guidelines recommend that primary care providers start guiding young people towards a planned move to adult care from age 12^[2]. Got Transition’s Six Core Elements, the approach called for in the 2018 US clinical report on transition, run from a transition policy at 12–14, through readiness checks and a transition plan, to transfer at 18–21^[4].

Few autistic young people get this. In parent-reported data from the 2016 and 2017 US National Survey of Children’s Health (NSCH), 8.9% of autistic adolescents aged 12–17 met all three parts of the recommended transition measure (time alone with their provider, help to build self-management skills or understand the changes at 18, and a discussion about moving to an adult provider). Their age-adjusted rate was 35% lower (prevalence ratio 0.65) than for adolescents with no mental, behavioural or developmental disorder (MBDD, the survey’s category)^[2]. A separate analysis of 2016–2018 data, overlapping in years, found that 11.1% of autistic youth with special health care needs received transition services, one of the lowest rates of any condition studied^[5]. The gap is long-standing: in the 2005–2006 National Survey of Children with Special Health Care Needs (ages 12–17), fewer than a quarter of autistic youth received transition services, against half of youth with other special health care needs, and only 14% had discussed moving to an adult provider with their paediatrician^[6].

In the 2016 survey, only 6.5% of autistic youth had all three core parts of preparation, and 37.8% had met their doctor privately, against 52.2% of youth with other MBDDs^[7]. The authors suggest providers “possibly have lowered expectations that youth with ASD will be able to take over healthcare decisions and actions when they reach adulthood”.

Preparation is thin for everyone: across 2018–2022, only 18% of all US youth aged 12–17 received it^[8], but autistic young people start lower, and many clinicians are not confident about it. Among 74 providers in the Philadelphia area, conversations about transition with autistic patients began at a median age of 16, and over half felt only “somewhat” or “a little” comfortable having them^[9]. Schools show what a duty can do: US special education law requires a transition plan for every student with an Individualized Education Program (IEP)^[1], and in 2022 records for 4,311 autistic 16-year-olds in nine states, 94.8% of those with an IEP had one^[10]. A plan on file is not support in itself, but the contrast is stark.

When school ends, services fall away

The best national picture comes from the US National Longitudinal Transition Study-2, which followed students in special education from 2001 (aged 13–16) to 2009. At school, 97% of autistic youth received at least one of 12 services. By their early 20s, about one in four received none, and every type of service had become less common^[1]. Speech-language therapy fell from 66% at age 17 to 10% at any point after school.

The report is clear about why: after the last day of high school, “the legal mandate for help suddenly ends. There is no federal requirement for providing supportive services in adulthood.” In the US, many adult supports also require an intellectual disability, which most autistic young people do not have^[1]. The authors admit they cannot separate need from access: “Maybe fewer people need them, or maybe fewer people are able to access them.”

Who falls hardest is clearer. In the same study’s 2007–2008 survey of young adults aged 19–23, 39.1% had received none of four core services (mental health, medical, speech therapy and case management) in the previous two years or since leaving school. The adjusted odds of receiving nothing were 3.31 times higher for African American than for white young adults, and 5.96 times higher for families on $25,000 a year or less than for those above $75,000^[11]. A 14-year study of 204 autistic people in Wisconsin and Massachusetts found that services started falling during high school and that unmet needs rose right after leaving^[12].

Health care follows a similar slope. In US private insurance claims for 16,338 autistic youth aged 16–23, the share using office, outpatient, hospital and home care fell with age; emergency department use did not^[13]. In Medicaid data for 2015–2019 on autistic young people with and without intellectual disability, use of care “generally declined” into adulthood, even as spending on psychiatric outpatient and long-term care rose among those still using it^[14]. The same disconnection shows up in work and study (see our autism employment gap article).

The need does not end at 18, but planned care often does

In Ontario, Canada, where child and adult mental health and social services divide at 18, a population study of 18–24-year-olds in the 2009/10 fiscal year found high levels of need among 5,095 autistic young adults, compared with 393,263 peers (a 20% random sample) with no developmental disability^[15]:

England’s national hospital data show the handover in admissions. Among 46,270 autistic young people born in 1990–2001 (without a recorded learning disability), planned admissions fell by about 5% per year of age during transition (16 to 18) after rising before it. Unplanned admissions were flat during transition, then rose by about 3% a year from 19 to 24^[16]. The researchers caution that the dip in planned care may reflect lost continuity, or care moving to GPs and community settings.

Specialist follow-up is a particular risk for long-term conditions such as epilepsy, and many adolescents with epilepsy are autistic or have other neurodevelopmental conditions (see autism and epilepsy). In Sweden’s national registers for 2013–2021, 22% of young people with epilepsy who had seen a specialist before 18 had no planned specialist follow-up in the next two years, and the share needing acute care for epilepsy rose from 3% to 7% after 18^[17]. That study covered all young people with epilepsy, not only autistic ones. Psychiatric emergencies are also more common at these ages: in one US university health system, autistic patients aged 17–21 had 2.28 times the adjusted odds of a psychiatric emergency visit compared with those aged 11–16^[18].

In mental health care, many leave children’s services without an adult service to go to

An English study followed 118 autistic young people with additional mental health problems for three years as they left child and adolescent mental health services (CAMHS). Of the 93 whose outcome was known, 25 moved to adult mental health services, 48 were discharged to primary care and 20 were still in CAMHS at the final visit^[3]. Ongoing anxiety and depression scores did not predict who moved on. An ADHD diagnosis did, with 8.22 times the odds, which the authors think reflects adult services seeing young people for ADHD medication. Parents and young people said those six-monthly or yearly medication appointments “did not meet the wider needs of young people coping with a broad range of concerns”. The authors add that primary care is the right route for some.

The pattern holds across Europe. An analysis from the MILESTONE study followed 488 young people in seven countries, including the UK, who still had clinical needs when they reached the CAMHS age limit. In all, 336 “fell through the gap”, meaning they were discharged with no onward referral, or referred and then discharged while still in need. Of the 182 with a neurodevelopmental diagnosis (a group that includes ADHD), 133 fell through^[19]. Health care costs fell for everyone, which the authors read as a sign that “the intensity of mental health support reduces for all young people as they cross the CAMHS boundary, regardless of clinical need”. In a Turkish university hospital, 38.4% of 211 young people with neurodevelopmental conditions who had long been under CAMHS care moved to adult services, and proactive information from CAMHS doctors predicted transfer^[20]. See also anxiety and depression in autistic people.

What young people and families say

In four US focus groups (a qualitative study) with 13 autistic young people and 19 caregivers, parents described losing a trusted provider, adult providers who knew little about autism, and worries about guardianship. The young people described confusion and anxiety about managing their medical lives on their own^[21]. Its title puts it plainly: “You think it’s hard now … It gets much harder for our children.”

A 2026 US qualitative study interviewed 19 autistic young people aged 15–25. The researchers summarised their accounts of transition as “marked by increased expectations for independent health care management without commensurate preparation, relational continuity, or structural support”. They talked about fragmented care, being dismissed by providers and gaps in confidence that led to stress and avoiding care^[22]. In their own words:

• “They kind of expected us to know what we were doing, instead of talking us through how these things work.”
• “I feel like we are forced into it, but at the same time, no one trusted us to do it.”
• “It is more difficult because it’s like more time, energy, and resources have to be given just to get the same level of care that others might receive.”

A review of qualitative studies linked poor outcomes to “poor person-environment fit, uncertainty about the roles of parents, and the lack of comprehensive or integrated services”^[23]. A 2026 review of moves from CAMHS to adult services for autistic and ADHD young people found poor communication between services. Involving young people in decisions, and clinicians who adapted their approach, helped. Only five of its ten studies included neurodivergent people’s own views^[24]. The gap between guidance and practice is not unique to autism: when England’s Care Quality Commission spoke to 180 young people aged 14–25 with complex health needs, or their parents, in 2014, only 50% said they had had support from a lead professional before the move^[25].

What the evidence asks of us

The problem is not a lack of guidance: England’s NICE guideline on transition from children’s to adults’ services (NG43, 2016) already describes most of what autistic young people and families are asking for^[26]. It is not reaching them. For services, commissioners and governments, the evidence points to five priorities:

• Start early, and plan around the person, not the birthday. NICE says planning for adulthood should start from school year 9 (age 13 or 14) at the latest, including for young people not covered by care and education legislation, and that transfer should “not be based on a rigid age threshold” but should happen “at a time of relative stability”^[26].
• A named worker and a warm handover. NICE recommends a named worker for at least six months before and after transfer, a meeting with the adult service before the move, the same adult practitioner for the first two appointments attended, and tools such as communication passports^[26].
• Never discharge into nothing. Where a young person does not meet the criteria for specialist adult services, NICE says involving the GP “is absolutely critical”, and asks for a local gap analysis that pays “particular attention” to young people with neurodevelopmental disorders^[26]. The 2026 European guidance covers managed discharge to “alternative care settings” as well as transfer^[27], and the MILESTONE authors ask for the same^[19].
• Design it with autistic young people. NICE recommends co-producing transition policies with young people^[26]. Yet in a 2026 review of 61 studies of transition tools for young people with neurodevelopmental conditions, only 38% had involved young people in the design^[28].
• Count it, and close the equity gaps. We found regular national figures on transition preparation for autistic young people only in the US survey, and none routinely published for any UK nation. Scotland’s June 2025 National Transitions to Adulthood Strategy for Young Disabled People^[29] and its February 2026 report on actions^[30] set a direction, after a member’s Bill to legislate for transitions planning fell at its first stage in November 2023^[31]. Such strategies should report outcomes for autistic young people by ethnicity and income, given the US evidence on who ends up with nothing^[11].

A good transition decides whether a young person reaches adult life with a clinician who knows them and a plan for their epilepsy or mental health, or with a discharge letter and a gap. More on autistic people’s health across the lifespan is in our Autism & Health research library.

Language: this piece uses identity-first language (“autistic people”), the preference of most autistic-led organisations, and uses clinical terms such as “autism spectrum disorder” or “mental, behavioural or developmental disorder” only when naming a study, survey category or quotation.

Why we're publishing this

Health Insurance UK is a commercial health-insurance resource, not a charity or a campaign. Autistic young people, their families and autistic-led organisations keep describing the same services cliff, and they deserve the research behind it clean, sourced and in one place. The case is theirs; our part is to say plainly what the figures show: the move to adult care is predictable, the guidance on doing it well exists, and too many autistic young people are still left to find their own way across.

How to read this data

Most of the numbers are from US national surveys that ask parents about transition preparation; they are parent-reported, cross-sectional, and the NSCH analyses overlap in years. The services-cliff data are from students in special education in 2001–2009: old, and missing autistic young people outside special education. Claims and hospital studies show changes in service use, not unmet need. The European mental health studies group autism with ADHD, and the Swedish epilepsy study covers everyone with epilepsy. The experience studies are small and qualitative. Odds ratios are given as odds. Figures from different countries and years are not directly comparable and are not a trend.

Use this data

Free to cite with attribution to Health Insurance UK. Charities, campaigners and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Important: This article summarises published research for general information. It is not medical advice and cannot be used to diagnose, treat or predict anything about an individual. If you have concerns about your own or someone else’s health, please speak to a qualified health professional.

Sources

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