Some people might spend decades feeling different. Social interactions may feel like navigating a foreign language, sensory environments often overwhelm, and they need predictable routines to function well.
Adult autism diagnosis has increased significantly as more people recognise autism as a lifelong neurological difference, not just a childhood condition. If you think you might be autistic, this guide explains the assessment process and what to expect.
Understanding Adult Autism
Autism in adults often looks different from childhood presentations, especially in people who’ve developed coping strategies.
Why Adult Autism Gets Missed
Historical problems:
- Early research focused on children with noticeable developmental delays
- 80% of ADHD research participants were boys; a similar bias affected autism research¹
- Diagnostic criteria based on male presentations
- Assumption that autism was only a childhood condition
Masking behaviours:
- Many adults learned to copy social behaviours without understanding the rules
- Developed coping strategies that hide difficulties whilst creating exhaustion
- May appear socially capable while struggling significantly internally
Wrong diagnosis:
- Adult autism is often diagnosed as anxiety, depression, or personality disorders
- Social difficulties are blamed on other conditions
- Sensory issues dismissed or attributed to stress
Modern Understanding
- Autism is a lifelong neurological difference
- Many highly successful people are autistic
- Masking behaviours are common
- Late diagnosis is increasingly recognised and supported
The UK Crisis: Waiting Times
The current situation is severe:
- 204,876 people waiting for adult autism assessments (September 2024)
- 96% increase from 2022
- 89% wait longer than NICE’s 13-week guideline
- Some regions report 5+ year waits
- National Autistic Society projects over 256,000 waiting by 2025²
Recognising Adult Autism
Social Communication and Interaction
- Difficulty with conversation flow and turn-taking
- May speak at length about interests
- Trouble reading facial expressions and body language
- Very direct communication style
- Find social interactions exhausting
Patterns and Routines
- Intense, focused interests beyond typical hobby level
- Strong preference for routines and predictability
- Get distressed when plans change unexpectedly
- Repetitive behaviours or stimming
- Specific sensory preferences and dislikes
Other Common Signs
- Strong attention to detail, but may miss ‘big picture’
- Think in literal, concrete terms
- Difficulty with planning and organisation
- Intense emotional responses
- Strong sense of justice and fairness
The Assessment Process
Before Assessment
- Complete detailed questionnaires
- Gather childhood information from the family
- Write down current challenges and strengths
- Prepare examples of how traits affect daily life
Assessment Parts
Clinical interview:
- Current functioning and traits
- Developmental history exploring childhood patterns
- Social communication patterns
- Sensory experiences and coping strategies
Standardised tools:
- ADOS-2 (Autism Diagnostic Observation Schedule) – gold standard assessment
- ADI-R (Autism Diagnostic Interview-Revised) – comprehensive interview
- Additional questionnaires and measures
- Cognitive assessment if needed
Other information:
- Input from family or close friends when possible
- Review of school reports or work evaluations
- Medical history and previous diagnoses
- Family history (autism has genetic components)
What to Expect
- Quiet, comfortable assessment environments, an online assessment might be best for you
- Breaks provided as needed
- Not a test to pass or fail – be your authentic self
- Opportunity to ask questions throughout
Assessment Costs and Options
NHS Assessment
Positives:
- No direct cost
- Thorough standardised process
- Links with other NHS services
Current challenges:
- Crisis-level waiting times (5+ years in some areas)
- Different quality in different regions
- Limited post-diagnosis support
- Many services are closed to new referrals
Private Assessment
Positives:
- Much faster access
- Choice of assessor and location
- Comprehensive post-diagnosis support
- Detailed reports suitable for workplace accommodations
Current costs:
- Average range: £1,800-£3,500
- London average: £2,344
- Priory Group: £2,150-£2,500
- More affordable options from £1,000
- Most include a comprehensive evaluation and detailed reports
Choosing an Assessment Provider
Look for:
- Clinical psychologists or psychiatrists specialising in autism
- Experience with adult presentations and masking
- Training in ADOS-2 and ADI-R (gold standard tools)
- Understanding of co-occurring conditions (ADHD, anxiety, depression)
- Clear explanation of their process and costs
Questions to Ask:
- What’s your experience with adult autism assessment?
- How do you handle limited childhood information?
- Do you assess for co-occurring conditions like ADHD?
- What standardised tools do you use?
- What does your assessment process include?
- When will I receive my report, and what will it include?
Red Flags:
- Those unfamiliar with adult presentations or masking
- Assessors who dismiss your concerns without a proper evaluation
- Providers who guarantee specific outcomes
- Lack of appropriate qualifications or training
Preparing for Assessment
Gathering Information
- School reports, especially comments about social behaviour
- Medical records from childhood, if available
- Photos or videos that might show stimming or other behaviours
- Family stories about your early development
Current Examples
- Work situations where you excel (often detail-oriented work)
- Social difficulties in professional settings
- Challenges with office politics, meetings, or networking
- Need for accommodations or environmental changes
Managing Assessment Anxiety
- Visit the location beforehand if possible
- Bring comfort items (fidget toys, water, snacks)
- Plan for recovery time after assessment
- Remember: be yourself, don’t try to appear ‘more normal’
- Consider an online assessment, so you are more comfortable and in your own environment
After Your Assessment
If You Get an Autism Diagnosis
- Take time to process emotionally (this can take weeks or months)
- Consider workplace accommodations
- Connect with the autistic community for support
- Access autism-specific resources and strategies
- Celebrate finally understanding yourself
If You Don’t Get a Diagnosis
- Explore other explanations for your experiences
- Consider assessment for other conditions
- Use helpful strategies regardless of diagnosis
- Get a second opinion if you strongly disagree with the results
Using Your Diagnosis
Workplace Rights
- Disclosure is your choice – weigh up the benefits and risks
- Reasonable adjustments under the Equality Act 2010
- Examples: quiet workspace, written instructions, flexible hours
- The Access to Work scheme provides up to £66,000 annually⁴
- Occupational health referral for accommodation assessment
Education Support
- Disabled Students’ Allowance for university students
- Adjustments for exams and coursework
- Access to support services and mentoring
- Study skills support tailored to autistic learning
Healthcare Benefits
- Tell other healthcare providers about your diagnosis
- Access to autism-informed mental health services
- Better understanding of how other conditions interact with autism
- Medication considerations that account for autism traits
Living Well as an Autistic Adult
Employment Reality
Current statistics show significant challenges:
- Only 22-30% of autistic adults are employed
- Autistic people earn one-third less than non-disabled individuals
- Autism shows the worst employment rate of all disability groups⁴
However, with proper support and accommodations, many autistic people thrive in careers that match their strengths.
Self-Advocacy
- Understand your specific needs and preferences
- Learn to communicate these clearly to others
- Build supportive environments at home and work
- Connect with other autistic adults for community
Celebrating Strengths
- Detail orientation and quality focus
- Deep expertise in areas of interest
- Systematic and logical thinking
- Honesty and direct communication
- Pattern recognition and analytical skills
Common Questions
Can successful people be autistic?
Absolutely. Many autistic adults are highly successful, particularly in fields that value systematic thinking and attention to detail.
I have relationships – can I still be autistic?
Yes. Many autistic adults have meaningful relationships, though they may approach them differently.
What if I don’t remember my childhood well?
Assessors can often identify autism from current functioning patterns even with limited early history.
Should I consider assessment for both autism and ADHD?
If you relate to both, a comprehensive assessment provides a valuable understanding.
Will getting diagnosed change who I am?
An autism diagnosis doesn’t change who you are – it provides a framework for understanding why you experience the world the way you do.
Think you might be autistic?
Understanding your neurological differences can transform your self-awareness and access to support.
- Speak to specialists who understand adult autism
[Book Your Online Autism Assessment] - Many people have both ADHD and autism
[Consider Full Assessment]
References:
- Young et al. (2020). BMC Psychiatry. DOI: 10.1186/s12888-020-02707-9
- National Autistic Society (2024). Autism assessment waiting times report
- Rong et al. (2021). Research in Autism Spectrum Disorders. DOI: 10.1016/j.rasd.2021.101759
- Buckland Review (2024). UK Government employment review
- UK Private Assessment Cost Analysis (2024)