Autism Spectrum Disorder in Adults: Diagnosis and Management

Introduction

Autism spectrum disorder (ASD) is a complex, lifelong neurodevelopmental condition affecting adults, characterized by persistent challenges in social interaction, communication, and the presence of restricted, repetitive behaviors or interests. Understanding Autism Spectrum Disorder In Adults Diagnosis And Management is crucial for improving the lives of affected individuals. This guideline provides a comprehensive overview of how to effectively identify, assess, and manage ASD in adults aged 18 and over, aiming to enhance access to support, improve care experiences, and promote independent living.

Autism manifests uniquely in each adult, influenced by life stages, interventions received, and co-occurring conditions like learning disabilities. Individuals with ASD often experience difficulties with cognitive and behavioral flexibility, sensory processing, and emotional regulation. The spectrum of autism features can range from mild to significant, fluctuating with time and circumstances.

A significant portion of autistic adults face social and economic exclusion, often due to their condition being overlooked by professionals in healthcare, education, and social care. This lack of recognition creates barriers to accessing necessary support and services for independent living. Furthermore, autistic adults have a higher likelihood of coexisting mental and physical health conditions, and may encounter the criminal justice system, highlighting the importance of recognizing and addressing their specific needs.

Variations in identification rates, referral processes, diagnostic assessment waiting times, and assessment criteria contribute to delays in diagnosis and access to appropriate services for adults with autism. Effective diagnosis and management of autism spectrum disorder in adults requires a streamlined, well-coordinated approach.

A positive diagnostic process involves clear communication between professionals, the autistic individual, and their support network, fostering shared decision-making. This establishes a foundation for long-term understanding and support. However, many adults struggle to access diagnostic assessments, and even after diagnosis, may lack follow-up support due to service gaps or unclear care pathways. This guideline addresses these critical issues to improve the landscape of autism spectrum disorder in adults diagnosis and management.

In this context, ‘autism’ encompasses autism spectrum disorders, including Asperger’s syndrome and atypical autism. This guideline is designed for use by a wide range of professionals across primary, community, secondary, and tertiary healthcare and social care settings who are involved in the care of autistic adults. It adapts and builds upon existing NICE guidelines to provide a focused and comprehensive resource for autism spectrum disorder in adults diagnosis and management.

Key Priorities for Implementation

To ensure effective autism spectrum disorder in adults diagnosis and management, the following recommendations are prioritized for implementation:

General Principles of Care

• All professionals working with autistic adults should:
  • Partner with autistic adults and, when appropriate, their families, partners, or carers.
  • Offer respectful support and care.
  • Invest time in building trusting, empathetic, and non-judgmental relationships as a cornerstone of care.
• Local autism multi-agency strategy groups should include representatives from adult services (mental health, learning disability, primary healthcare, social care, housing, education, employment, criminal justice, and third sector), as well as meaningful representation from autistic individuals and their support networks, to effectively provide care for autistic adults. This collaborative approach is essential for successful autism spectrum disorder in adults diagnosis and management.

Identification and Assessment

• Assessment for autism should be considered when an adult presents with:
  • Persistent difficulties in social interaction.
  • Persistent difficulties in social communication.
  • Stereotypic (rigid and repetitive) behaviors, resistance to change, or restricted interests.
    AND
  • Problems obtaining or maintaining employment or education.
  • Difficulties initiating or sustaining social relationships.
  • Previous or current contact with mental health or learning disability services.
  • A history of neurodevelopmental conditions or mental disorders.
• For adults without moderate or severe learning disabilities, the Autism-Spectrum Quotient – 10 items (AQ-10) can be used. A score of 6 or above, or clinical suspicion of autism, should prompt a comprehensive assessment for autism spectrum disorder in adults diagnosis.
• When assessing behavior that challenges, a functional analysis should be conducted to identify triggers and maintaining factors, including physical disorders, social and physical environments, coexisting mental disorders, communication problems, and changes in routine. This thorough assessment is vital for effective autism spectrum disorder in adults management.

Interventions for Autism

• Individual supported employment programs should be considered for autistic adults without a learning disability or with a mild learning disability who are experiencing employment difficulties, as part of autism spectrum disorder in adults management.

Organisation and Delivery of Care

Effective organization and delivery of care are essential components of autism spectrum disorder in adults diagnosis and management, requiring coordinated and accessible services.

Recommendations

This guidance is based on the best available evidence for autism spectrum disorder in adults diagnosis and management. It is crucial to involve individuals in discussions and decisions about their care, respecting their right to informed choices.

1.1. General Principles of Care

Principles for Working with Autistic Adults and Their Support Networks

1.1.1. All staff working with autistic adults should:

• Work in partnership with autistic adults and their families, partners, or carers where appropriate.
• Provide respectful support and care.
• Build trusting, supportive, empathetic, and non-judgmental relationships as a fundamental aspect of care.

1.1.2. All staff should possess an understanding of:

• The nature, development, and course of autism.
• The impact on personal, social, educational, and occupational functioning.
• The influence of the social and physical environment.

1.1.3. Health and social care professionals should have a broad understanding of:

• The nature, development, and trajectory of autism.
• Its impact on various aspects of life and interactions with the environment.
• The interplay with coexisting mental and physical disorders and their management.
• Potential discrepancies between IQ and adaptive functioning, impacting daily living skills and independence.

1.1.4. Professionals should:

• Foster autonomy, promote active participation in care decisions, and support self-management.
• Maintain consistent individual relationships whenever possible.
• Provide comprehensive information in accessible formats, considering communication needs.
• Consider the benefit of a trained advocate for the individual.

1.1.5. Professionals should ensure they are:

• Easily identifiable and approachable.
• Clearly communicate their role and function.
• Use preferred names and titles.
• Explain clinical language clearly and ensure understanding.
• Accommodate communication needs, including learning disabilities, sensory impairments, or language difficulties, providing aids or interpreters as needed.

1.1.6. Professionals should be:

• Familiar with local and national resources for autistic people.
• Able to advise on accessing and engaging with these resources.

1.1.7. Encourage participation in self-help or support groups, providing assistance to attend and engage in activities.

1.1.8. Consider the physical environment in all settings, adjusting factors that may trigger challenging behavior:

• Personal space (maintain at least an arm’s length).
• Setting (use visual supports like labels and symbols).
• Colors (use low-arousal colors, avoid patterns).
• Lighting (reduce fluorescent lighting, increase natural light).
• Noise levels (reduce external sounds, use earplugs if needed).

When environmental adjustments are not feasible, modify assessment or intervention duration and nature, including breaks, to minimize negative environmental impact.

1.1.9. Professionals should be:

• Aware of under-reporting and under-recognition of physical disorders in autistic individuals.
• Vigilant for unusual food preferences or lack of physical activity.
• Offer advice on healthy diet and exercise, considering sensory sensitivities, and refer to GPs or dieticians if needed.

1.1.10. Staff should be sensitive to sexuality issues, including asexuality and relationship development, recognizing that social communication challenges may lead to misunderstandings or exploitation.

1.1.11. Ensure autistic adults with caring responsibilities receive support to access mental and physical health and social care services, including parenting support, social support, and childcare to enable access to appointments and services.

Structures for Organisation and Delivery of Care and Interventions

1.1.12. Local autism multi-agency strategy groups must include representation from various adult services and autistic individuals and their support networks to effectively provide care for autistic adults, ensuring comprehensive autism spectrum disorder in adults management.

1.1.13. Specialist community-based multidisciplinary teams for autistic adults (specialist autism teams) should be established in each area, comprising clinical psychologists, nurses, occupational therapists, psychiatrists, social workers, speech and language therapists, and support staff.

1.1.14. Specialist autism teams should play a key role in:

• Specialist diagnostic and assessment services for autism spectrum disorder in adults diagnosis.
• Specialist care and interventions for autism spectrum disorder in adults management.
• Providing advice and training to other professionals.
• Supporting access to housing, education, and employment.
• Supporting families, partners, and carers.
• Providing care for autistic adults in residential settings.
• Training and support for staff in residential and community settings.

Involving Families, Partners, and Carers

1.1.15. Discuss with autistic adults their preferences for involving families, partners, or carers in their care, considering the Mental Capacity Act and communication needs.

1.1.16. If involvement is desired:

• Negotiate confidentiality and information sharing.
• Explain how support networks can aid care plans.
• Ensure services are not withdrawn due to support network involvement, unless agreed upon.

1.1.17. Provide all support networks with verbal and written information about:

• Autism and its management.
• Local support groups and services.
• Their right to a carer’s assessment.

1.1.18. If an autistic person does not want support network involvement:

• Provide information on who to contact with concerns.
• Recognize potential ambivalence or negative feelings towards support networks, which may stem from various factors, including coexisting mental disorders or past experiences.

1.2. Identification and Assessment

Principles for Effective Assessment of Autism

1.2.1. Staff responsible for identification and assessment should adapt procedures to ensure effectiveness, modifying settings and assessment duration as needed to facilitate accurate autism spectrum disorder in adults diagnosis.

Identification and Initial Assessment of Possible Autism

1.2.2. Consider assessment for possible autism when an adult exhibits:

• Persistent social interaction and communication difficulties.
• Stereotypic behaviors, resistance to change, or restricted interests.
• AND associated challenges in employment, education, relationships, or a history of mental health or neurodevelopmental conditions.

1.2.3. For adults without moderate or severe learning disabilities, use the AQ-10. A score of 6 or above, or clinical suspicion, warrants a comprehensive assessment for autism spectrum disorder in adults diagnosis.

1.2.4. For adults with moderate or severe learning disabilities, assess for:

• Difficulties in reciprocal social interaction.
• Lack of responsiveness.
• Limited behavioral change in social situations.
• Limited empathy.
• Rigid routines and resistance to change.
• Marked repetitive activities.

If two or more categories are present, offer a comprehensive assessment for autism spectrum disorder in adults diagnosis.

Comprehensive Assessment of Suspected Autism

1.2.5. A comprehensive assessment for autism spectrum disorder in adults diagnosis should be:

• Conducted by trained and competent professionals.
• Team-based and multidisciplinary.
• Involve informants or documentary evidence of past and present behavior and development.

1.2.6. Discuss the assessment purpose and feedback process at the outset. Feedback should be individualized and may involve support networks or advocates.

1.2.7. Assess for:

• Core autism features present since childhood.
• Developmental history.
• Behavioral problems.
• Functioning at home, education, or employment.
• Physical and mental disorders.
• Other neurodevelopmental conditions.
• Sensory sensitivities and attention to detail.

Directly observe core autism features, especially in social situations, for accurate autism spectrum disorder in adults diagnosis.

1.2.8. Consider formal assessment tools like AAA, ADI-R, ADOS-G, ASDI, RAADS-R for complex cases without learning disabilities, and ADOS-G, ADI-R for those with learning disabilities in autism spectrum disorder in adults diagnosis.

1.2.9. Tools like DISCO, ADOS-G, or ADI-R can structure complex assessments for autism spectrum disorder in adults diagnosis.

1.2.10. Consider differential diagnoses and coexisting disorders such as other neurodevelopmental conditions, mental disorders, neurological disorders, physical disorders, communication difficulties, and sensory sensitivities during assessment for autism spectrum disorder in adults diagnosis.

1.2.11. Avoid routine use of biological, genetic tests, or neuroimaging for diagnostic purposes in autism spectrum disorder in adults diagnosis.

1.2.12. Assess risks including self-harm, escalation of problems, harm to others, self-neglect, support breakdown, and exploitation. Develop a risk management plan if needed as part of autism spectrum disorder in adults management.

1.2.13. Develop a care plan based on the comprehensive assessment and risk management, addressing individual and support network needs for effective autism spectrum disorder in adults management.

1.2.14. Provide a ‘health passport’ for autistic adults with care and support needs information for all staff.

1.2.15. Develop a 24-hour crisis management plan if necessary, detailing triggers, reactions, roles of specialist teams and services, advice for professionals and support networks, and environmental adaptations for autism spectrum disorder in adults management.

1.2.16. Seek a second opinion if there’s diagnostic uncertainty, disagreement, lack of local expertise, or complex coexisting conditions in autism spectrum disorder in adults diagnosis.

1.2.17. Consider further investigations like genetic tests, EEG, hearing/sight tests, or other medical tests based on individual presentation and clinical judgment for comprehensive autism spectrum disorder in adults diagnosis.

1.2.18. Offer follow-up appointments to all diagnosed adults to discuss implications, concerns, and future care and support needs as part of autism spectrum disorder in adults management.

Assessment of Behavior That Challenges

1.2.19. Assessment of behavior that challenges should be integrated into the comprehensive assessment for autism spectrum disorder in adults diagnosis.

1.2.20. Conduct a functional analysis to identify triggers and maintaining factors for behavior that challenges, including physical disorders, environmental factors, coexisting mental disorders, communication problems, and routine changes, essential for effective autism spectrum disorder in adults management.

1.3. Identifying Interventions and Monitoring Use

1.3.1. When deciding on interventions for autism spectrum disorder in adults management, consider:

• Past intervention experiences and responses.
• Autism nature and severity.
• Functional impairment extent.
• Social and personal factors.
• Coexisting disorders.
• Predisposing and precipitating crisis factors.

1.3.2. Take into account:

• Increased anxiety around decision-making.
• Risk of altered medication sensitivity.
• Environmental suitability for sensory sensitivities.
• Importance of predictability and structure.
• Support needed to access interventions for effective autism spectrum disorder in adults management.

1.3.3. Provide information on:

• Intervention nature, content, and duration.
• Acceptability and tolerability.
• Interactions and side effects.
• Implications for current interventions.

1.3.4. For pharmacological interventions:

• Be aware of potential sensitivity to side effects.
• Start with low doses for safe autism spectrum disorder in adults management.

1.3.5. Regularly review all interventions for:

• Benefits using formal ratings.
• Adverse events.
• Monitoring requirements of medications.
• Adherence to the intervention for effective autism spectrum disorder in adults management.

1.4. Interventions for Autism

Psychosocial Interventions for Core Features of Autism

1.4.1. For adults without or with mild-moderate learning disabilities and social interaction problems, consider group or individual social learning programs to improve social interaction, a key component of autism spectrum disorder in adults management.

1.4.2. Social learning programs should include:

• Modeling.
• Peer or individual feedback.
• Discussion and decision-making.
• Explicit rules.
• Strategies for social situations.

1.4.3. Do not use facilitated communication for autism spectrum disorder in adults management.

Psychosocial Interventions Focused on Life Skills

1.4.4. For adults across intellectual abilities needing help with daily living, consider structured, predictable training based on behavioral principles for autism spectrum disorder in adults management.

1.4.5. For adults without or with mild-moderate learning disabilities, who are socially isolated, consider group or individual structured leisure activity programs to enhance social contact and skills within autism spectrum disorder in adults management.

1.4.6. Structured leisure activity programs should:

• Focus on interests and abilities.
• Include regular meetings for valued activities.
• Have a facilitator with autism understanding.
• Provide structure and support.

1.4.7. For adults without or with mild-moderate learning disabilities with anger and aggression, offer anger management interventions adapted for autism within autism spectrum disorder in adults management.

1.4.8. Anger management interventions should include:

• Functional analysis of anger.
• Coping-skills training.
• Relaxation training.
• Problem-solving skills development.

1.4.9. For adults without or with mild learning disabilities at risk of victimization, consider anti-victimization interventions teaching decision-making and problem-solving skills as part of autism spectrum disorder in adults management.

1.4.10. Anti-victimization interventions should include:

• Identifying and modifying decision-making skills in abuse-related situations.
• Developing personal safety skills.

1.4.11. For adults without or with mild learning disabilities with employment difficulties, consider individual supported employment programs for effective autism spectrum disorder in adults management.

1.4.12. Supported employment programs should include:

• Help with CVs, job applications, and interviews.
• Work role and behavior training.
• Job matching.
• Employer advice on workplace adjustments.
• Ongoing support for both employee and employer.

Biomedical Interventions and Core Features of Autism

1.4.13. Do not use anticonvulsants for managing core autism features in adults as part of autism spectrum disorder in adults management.

1.4.14. Do not use chelation for managing core autism features in adults in autism spectrum disorder in adults management.

1.4.15. Do not use exclusion diets, vitamins, minerals, or supplements for managing core autism features in adults as part of autism spectrum disorder in adults management.

1.4.16. Do not use cognitive-enhancing drugs for core autism features or routine cognitive/behavioral problems in adults in autism spectrum disorder in adults management.

1.4.17. Do not use oxytocin for managing core autism features in adults within autism spectrum disorder in adults management.

1.4.18. Do not use secretin for managing core autism features in adults for autism spectrum disorder in adults management.

1.4.19. Do not use testosterone regulation for managing core autism features in adults in autism spectrum disorder in adults management.

1.4.20. Do not use hyperbaric oxygen therapy for managing core autism features in adults in autism spectrum disorder in adults management.

1.4.21. Do not use antipsychotic medication for managing core autism features in adults within autism spectrum disorder in adults management.

1.4.22. Do not use antidepressant medication routinely for core autism features in adults as part of autism spectrum disorder in adults management.

1.5. Interventions for Behavior That Challenges

1.5.1. Before other interventions, address triggers and maintaining factors for behavior that challenges by offering:

• Care for physical disorders.
• Treatment for coexisting mental disorders.
• Environmental changes, including advice for support networks and physical environment adjustments, for effective autism spectrum disorder in adults management.

1.5.2. Offer psychosocial interventions as a first step if no underlying disorders or environmental problems are identified as triggers for behavior that challenges in autism spectrum disorder in adults management.

1.5.3. Use functional analysis to guide psychosocial interventions, identifying triggers, consequences, and behavioral trends to address the function of the behavior in autism spectrum disorder in adults management.

1.5.4. Base intervention choice on:

• Behavior nature and severity.
• Physical needs and capabilities.
• Environment.
• Support capacity of staff and support networks.
• Preferences of the autistic person and their support network.
• Past care history for effective autism spectrum disorder in adults management.

Psychosocial Interventions for Behavior That Challenges

1.5.5. Psychosocial interventions should be based on behavioral principles and functional analysis for autism spectrum disorder in adults management.

1.5.6. Psychosocial interventions should include:

• Clearly defined target behaviors.
• Focus on quality of life outcomes.
• Environmental factor assessment and modification.
• Defined intervention strategy.
• Clear reinforcement schedule.
• Specified timescale for goals.
• Systematic measurement of target behaviors for effective autism spectrum disorder in adults management.

Combined Interventions for Behavior That Challenges

1.5.7. Consider antipsychotic medication with psychosocial interventions when psychosocial approaches alone are insufficient for behavior that challenges. Prescribe by a specialist, monitor quality of life, review effects after 3-4 weeks, and discontinue if no clinical response after 6 weeks in autism spectrum disorder in adults management.

Pharmacological Interventions for Behavior That Challenges

1.5.8. Consider antipsychotic medication alone when psychosocial interventions are not feasible due to behavior severity. Prescribe by a specialist, monitor quality of life, review effects after 3-4 weeks, and discontinue if no clinical response after 6 weeks for autism spectrum disorder in adults management.

1.5.9. Do not routinely use anticonvulsants for managing behavior that challenges in autistic adults as part of autism spectrum disorder in adults management.

1.6. Interventions for Coexisting Mental Disorders

1.6.1. Staff delivering interventions for coexisting mental disorders should:

• Understand core autism features and their impact on mental disorder treatment.
• Seek advice from specialist autism teams on adapting interventions for autistic individuals for optimal autism spectrum disorder in adults management.

Psychosocial Interventions for Coexisting Mental Disorders

1.6.2. Offer psychosocial interventions informed by NICE guidance for specific coexisting mental disorders in autism spectrum disorder in adults management.

1.6.3. Adapt cognitive and behavioral interventions for autistic adults with common mental disorders to include:

• Concrete and structured approaches with written and visual aids.
• Emphasis on behavioral change as a starting point.
• Explicit rules and context.
• Plain English, avoiding metaphors and ambiguity.
• Support network involvement (if agreed).
• Attention maintenance with breaks and incorporation of special interests for effective autism spectrum disorder in adults management.

Pharmacological Interventions for Coexisting Mental Disorders

1.6.4. Offer pharmacological interventions informed by NICE guidance for specific coexisting mental disorders in autism spectrum disorder in adults management.

1.7. Assessment and Interventions for Families, Partners, and Carers

1.7.1. Offer support networks an assessment of their own needs, following NICE guidelines on supporting adult carers, crucial for holistic autism spectrum disorder in adults management.

1.7.2. Provide information and facilitate contact with support groups for support networks of autistic individuals, as part of autism spectrum disorder in adults management.

1.7.3. Offer information, advice, training, and support to support networks needing help with personal, social, or emotional care, or those involved in delivering interventions, in collaboration with professionals for comprehensive autism spectrum disorder in adults management.

1.8. Organisation and Delivery of Care

Developing Local Care Pathways

1.8.1. Local care pathways should be developed to promote good care principles for autism spectrum disorder in adults diagnosis and management. Pathways should be:

• Negotiable, workable, and understandable.
• Accessible and acceptable.
• Responsive to needs.
• Integrated.
• Outcome-focused.

1.8.2. Autism strategy groups should manage local care pathways, with a lead professional responsible. Aims include:

• Developing clear policies and protocols.
• Ensuring multi-agency training on autism and pathway operation.
• Making professionals aware of pathways and service access.
• Supporting integrated service delivery.
• Supporting smooth transitions to adult services.
• Auditing and reviewing pathway performance for effective autism spectrum disorder in adults diagnosis and management.

1.8.3. Pathways should promote access for all autistic adults, including those with coexisting conditions, women, older people, minority groups, transgender people, homeless people, travelers, and those in the criminal justice system, ensuring equitable autism spectrum disorder in adults diagnosis and management.

1.8.4. Professionals should provide pathway information appropriate to the individual’s understanding and community needs.

1.8.5. Pathways should offer evidence-based interventions and support choices at each step for person-centered autism spectrum disorder in adults management.

1.8.6. Pathways should respond to changing needs effectively, with clear goals, outcome measures, and mechanisms for prompt response to changing needs, ensuring adaptive autism spectrum disorder in adults management.

1.8.7. Pathways should provide integrated care across settings, minimizing transitions, building services around pathways, establishing links to other pathways, and designating care coordinators for seamless autism spectrum disorder in adults management.

Improving Access to Care

1.8.8. Establish a single referral point (including self-referral) to specialist services for autistic adults to streamline autism spectrum disorder in adults diagnosis.

1.8.9. Support service access by:

• Providing assessments and interventions in sensory-appropriate environments.
• Changing professionals if a supportive relationship cannot be established, enhancing engagement in autism spectrum disorder in adults management.

1.8.10. Support access through:

• Care coordination systems for continuity of care.
• Designating a professional to oversee care, typically in primary healthcare or specialist teams, for consistent autism spectrum disorder in adults management.

Residential Care

1.8.11. Residential care, when needed, should be in small, local, community-based units with single-person accommodation, structured to support collaboration and community living skills for long-term autism spectrum disorder in adults management.

1.8.12. Residential environments should include structured, purposeful activities promoting community integration and autonomy.

1.8.13. Residential environments should have:

• Designated areas with visual cues.
• Sensory adaptations.
• Private spaces for solitude.

1.8.14. Residential staff should:

• Understand effective residential care principles.
• Collaborate with specialist services for comprehensive care plans.
• Be trained in autism needs.
• Be consistent and predictable, yet flexible.
• Involve support networks for holistic autism spectrum disorder in adults management.

Conclusion

Effective autism spectrum disorder in adults diagnosis and management requires a multifaceted approach encompassing early identification, comprehensive assessment, tailored interventions, and well-organized care pathways. By prioritizing person-centered care, fostering collaboration among professionals and support networks, and implementing evidence-based strategies, we can significantly improve the quality of life and outcomes for autistic adults. This guideline serves as a crucial resource for healthcare professionals, commissioners, and service providers to enhance their practice and ensure that autistic adults receive the support and understanding they deserve. Continuous improvement in services and ongoing research are essential to further refine autism spectrum disorder in adults diagnosis and management and meet the evolving needs of this population.