Step-by-Step Guide Adult Autism Assessment

Step 1: Document Your Foundational History (A Deep Dive) 👶📚

The most critical requirement for an adult autism diagnosis is demonstrating that traits were present from early childhood. Focus your efforts here.

Actionable Tasks:

Early Development Milestones: Create a timeline. Note the age you started walking, talking, and interacting with others. Were there any noted delays, unusual regression, or highly formal language use (e.g., using advanced vocabulary or complex sentences too early)?

Play and Interests (Ages 2-8):

Did you engage in imaginative play, or was play strictly structured and repetitive?

Did you prefer organising objects (e.g., lining up toys) over using them for their intended purpose?

List any intense, focused special interests or obsessions (e.g., dinosaurs, maps, specific characters) that dominated your attention and conversation.

Childhood Social Dynamics:

Did you struggle to understand unspoken social rules or cues?

Do you recall instances of isolation, being bullied, or feeling profoundly different from your peers?

How did you cope with unexpected changes or transitions (e.g., a change in routine or school timetable)?

Step 2: Secure Your Childhood Informant 🗣️📞

The clinician needs objective information about your early life. A reliable informant is typically mandatory, often participating in an interview like the Autism Diagnostic Interview-Revised (ADI-R).

Actionable Tasks:

Identify the Best Candidate: The ideal informant is a primary carer (parent, older sibling, grandparent) who knew you well before the age of 12.

Prepare and Brief Them: Gently explain that they will be contacted by the assessor. Ask them to think about specific examples of your behaviour, not generalisations.

Example to Ask Them: "Can you remember a time I had a major meltdown? What caused it, and how did I react to being comforted?"

Confirm Willingness: Ensure your informant is willing and able to participate in a potentially lengthy interview. Provide their name and accurate contact information to the assessment centre.

Step 3: Catalog Current Traits Across Key Areas 🧠📝

Use a journal or digital note to track specific, recent examples of how autistic traits manifest in your adult life. This provides vital evidence of your day-to-day challenges and your need for support.

Actionable Tasks:

Communication & Social Interaction:

List specific examples of misinterpreting tone, sarcasm, or body language in the past month.

Note how you manage eye contact—is it difficult? Do you force it?

Describe your approach to conversational topics (e.g., difficulty starting/ending, monologuing about special interests).

Restricted, Repetitive Patterns & Interests:

Document any stimming (self-regulating movements like pacing, fidgeting, hand-flapping). When do you do it? Does it increase with stress?

Detail your adherence to routines. What happens when a routine is suddenly disrupted?

Thoroughly describe your most intense special interest(s). How much time do you dedicate to it? Is it a key way you manage stress or process information?

Sensory Experiences:

Log specific sensory sensitivities (hyper- or hypo-sensitivity) to sound, light, texture, taste, or smell.

Examples: Avoiding fluorescent lights, only wearing specific fabrics, needing earplugs in public, or seeking out deep pressure.

Step 4: Consolidate Supporting Documents 📂🗂️

Gathering external documentation can substantiate your personal account, lending weight to your assessment preparation.

Actionable Tasks:

School Records: Locate old report cards or school reports. Look for comments indicating:

Poor social integration or preference for solitary play.

Difficulties with organisation or transitions.

Unusually advanced skills in specific academic areas.

Work/Career Reviews: If applicable, find appraisals that mention difficulties with teamwork, following vague instructions, or interpersonal conflict, alongside praise for attention to detail or technical expertise.

Clinical History: Compile a list of all current and past diagnoses (e.g., anxiety, depression, OCD, or ADHD—as these frequently co-occur with ASD). Include a full list of all current medications and dosages.

Step 5: Prepare for the Assessment Day 🧘♀️✅

The assessment itself can be lengthy and exhausting. Prepare for the process to ensure you can present your history accurately.

Actionable Tasks:

Organise Your Notes: Type up your detailed history and checklist (Steps 1-4). It is completely acceptable to bring these notes and read from them. They act as an external memory aid.

Plan for Accommodations: Inform the assessor in advance if you require any specific adjustments (e.g., regular breaks, dim lighting, sitting away from a window, or wearing sunglasses/ear defenders).

Set an Intention: Decide to present as authentically as possible. Do not mask. The goal is an accurate diagnosis, and trying to appear 'neurotypical' will only lead to an incomplete or inaccurate result.

 

UK Adult Autism Assessment Waiting Times

 

1. 🏥 Standard NHS Referral (Free)

• Wait Time: The wait is very long, typically 16 to 24 months (over a year and a half) from referral to assessment.
• Longest Waits: In some areas, the wait can exceed 2 to 3 years.
• The Problem: The official NICE guideline recommends a wait of no more than 13 weeks, but most local services cannot meet this.

2. 🩺 NHS "Right to Choose" (RTC) – (England Only)

• Wait Time: Generally shorter than the standard NHS route, often around 6 to 18 months.
• Key Detail: This only applies if you are registered with a GP in England. You must ask your GP for a referral to a specialist RTC provider.
• Warning: Due to very high demand, some RTC providers have closed or restricted their waiting lists recently.

3. 💸 Private Assessment (Paid)

• Wait Time: Much faster, typically 4 to 12 weeks from booking to your assessment date. Some clinics offer appointments in as little as 2-3 weeks.
• Cost: The full assessment usually costs between £1,800 and £3,000.
• Note: Always check that the provider uses a multi-disciplinary team (MDT) and follows NICE guidelines to ensure the diagnosis is accepted by other UK services.

 

The NICE Guidelines (National Institute for Health and Care Excellence) set the gold standard for how adult autism assessments must be conducted in the UK.