Surveillance for Autistic Adults
There are no established evidence-based surveillance guidelines specifically for autistic adults, as current clinical practice guidelines focus exclusively on screening and surveillance in children aged 18-30 months. 1, 2
Critical Gap in Clinical Guidelines
The available evidence reveals a significant void in formal surveillance recommendations for autistic adults:
All major clinical guidelines address only pediatric populations, with the American Academy of Pediatrics recommending universal ASD screening at 18 and 24 months during well-child visits, but providing no guidance for adult surveillance 1, 2
Screening in adults is explicitly not recommended by current guidelines, leaving a substantial gap in systematic approaches to monitoring this population 2
Life expectancy is dramatically reduced in autistic adults by 20-30 years compared to non-autistic individuals, highlighting the urgent need for systematic surveillance approaches 2
Evidence-Based Surveillance Priorities for Autistic Adults
Given the absence of formal guidelines, surveillance should focus on the well-documented comorbidities and vulnerabilities in this population:
Mental Health Monitoring (Highest Priority)
Screen regularly for depression and anxiety, as 39-46% of autistic adults score in the 'Moderate' to 'Extremely Severe' range on validated screening tools 3
Use the Depression Anxiety Stress Scales-21 (DASS-21) as a rapid screening device, which has been validated specifically for autistic adults of average IQ 3
Monitor for social phobia using validated instruments like the Mini Social Phobia Inventory 3
Chronic Medical Conditions
Establish systematic monitoring for conditions with documented higher prevalence in autistic adults 2:
- Diabetes screening at regular intervals
- Epilepsy surveillance with appropriate neurological follow-up
- Gastrointestinal concerns assessment at each visit
- Feeding disorders evaluation
- Sleep disorders screening and management
Vulnerability Assessment
Assess for negative life experiences that contribute to mental health deterioration, including domestic abuse, financial exploitation, employment difficulties, and social service involvement 4
These vulnerability factors partially mediate the relationship between autism and depression, anxiety, and reduced life satisfaction 4
Practical Implementation Framework
Create a structured annual comprehensive assessment that includes:
- Mental health screening using DASS-21 3
- Review of chronic medical conditions listed above 2
- Vulnerability experiences assessment 4
- Functional status and independence evaluation
- Medication review, particularly for sleep disorders (melatonin shows effectiveness with minimal adverse effects) 2
Healthcare System Modifications
Implement the SPACE framework (Sensory, Predictability, Acceptance, Communication, Empathy) to make healthcare more accessible and affirming for autistic patients 2
Address documented barriers including healthcare providers' lack of understanding of autism in adults, which autistic adults consistently identify as a major obstacle to receiving appropriate care 5
Critical Pitfalls to Avoid
- Do not assume absence of childhood diagnosis means absence of autism - many autistic adults were not diagnosed in childhood
- Do not rely solely on patient self-report of mental health symptoms, as autistic adults may have difficulty identifying and communicating emotional states
- Do not overlook the 20-30 year reduction in life expectancy - this demands aggressive preventive care 2
- Do not use healthcare approaches designed for neurotypical adults without modification 5