Why an autism diagnosis is important, and what the next steps are

Autism spectrum disorder (ASD) affects how individuals perceive the world and interact with others. While autism can present very nuanced and individualised cognitive and behavioural patterns1, it also brings distinct strengths2. Identifying autism through a formal diagnosis is crucial for individuals to access the right support, interventions, and accommodations to thrive in various aspects of life.

A diagnosis helps individuals, families, and professionals better understand how an autistic person experiences the world3; allowing them to tailor support strategies accordingly. 

Without a diagnosis, many people living with autism may persistently encounter misunderstandings4, lack of accommodations5, and potentially even develop mental health conditions as a result6. At Harbor London, we provide whole-person support, management and guidance to ensure all individuals receive the support they need – contact us now to learn more.

The clinical perspective on autism 

Autism is best described as a lifelong neurodivergence – experienced by approximately 700,000 individuals in the UK – typically characterised by differences in social communication, sensory processing, and behaviour7. The clinical understanding of autism has evolved significantly over the years, moving away from outdated deficit-based models to a more nuanced view that recognises the diversity of autistic experiences8,9.

According to research by the National Institute for Health and Care Excellence (NICE)10, early diagnosis and intervention significantly improve outcomes for autistic individuals. Studies show that timely support can enhance communication skills and emotional wellbeing, for instance11,12. Autism is often co-occurring with conditions such as ADHD, anxiety disorders, and sensory processing differences, making a comprehensive assessment crucial13.

Neurologically, autism involves variations in brain structure and connectivity14. Functional MRI scans have demonstrated that autistic individuals process sensory and social information differently15, which can influence behaviour, communication, and cognition. Understanding these differences helps clinicians, educators, and families create supportive environments that respect neurodiversity and accommodate specific needs.

What it means, and what it doesn’t 

An autism diagnosis is not a label that defines a person. It is an insight into how they experience the world. It does not mean:

• That an individual is incapable of leading a fulfilling life
• That autism is something that needs to be ‘fixed’ or ‘cured’
• That all autistic people have the same traits or challenges

What it does mean:

• Access to tailored support and interventions
• A better understanding of individual strengths and differences
• Validation of experiences that may have previously been misunderstood

How to seek an autism diagnosis 

If you, a loved one, or someone you know suspect autism, seeking a professional assessment is the first step. Autism can be diagnosed at any age, though early identification is beneficial16. The process typically involves medical professionals, psychologists, and speech and language therapists working together to evaluate an individual’s developmental history and behavioural patterns.

The diagnostic process

The autism diagnostic process generally includes:

1. Initial consultation: a healthcare professional (GP, psychologist, or psychiatrist) discusses concerns and assesses whether a referral for a full assessment is appropriate.
2. Evaluation: a multidisciplinary team conducts observations, interviews, and standardised tests such as the Autism Diagnostic Observation Schedule (ADOS-2) and the Autism Diagnostic Interview-Revised (ADI-R).
3. Medical & developmental history review: assessing developmental milestones, past behaviours, and any co-existing conditions.
4. Feedback session & diagnosis: the assessment team provides a formal diagnosis and guidance on next steps.

Why it matters 

An autism diagnosis provides clarity and access to essential resources. Many autistic individuals, particularly those diagnosed in adulthood, express relief in finally understanding their experiences17 – to note one striking statistic, a recent study estimated that 90% of people over 50 may be living with undiagnosed autism in England alone18.  

Diagnosis allows access to:

• Special educational support and accommodations
• Workplace adjustments under the Equality Act 2010
• Therapeutic interventions such as occupational therapy, speech therapy, and cognitive behavioural therapy
• Community and peer support networks
• Strategies for self-advocacy and personal development

Recommendations for healthcare professionals

Healthcare professionals play a critical role in ensuring timely and accurate autism diagnoses. Here are some key recommendations:

• Stay updated on diagnostic criteria 

→ Keep informed about the latest research and best practices for diagnosing autism, including using validated tools like ADOS-2 and ADI-R19,20.

• Adopt a strength-based approach

→ Recognise the strengths and abilities of autistic individuals, rather than focusing solely on perceived ‘deficits’.

• Be proactive in identification

→ Encourage early assessments, as early intervention significantly improves outcomes.

• Consider co-occurring conditions

→ Be mindful that autism frequently coexists with ADHD, anxiety, sensory processing disorder, and other conditions.

• Provide clear guidance

→ Offer detailed next steps, resources, and support networks to families navigating a diagnosis.

• Advocate for accessibility

→ Generally promote those workplace and educational accommodations that help autistic individuals thrive.

The bottom line: why an autism diagnosis is important

Understanding autism through a clinical diagnosis is a powerful step towards self-awareness, acceptance, and the appropriate support. A diagnosis enables individuals to access services, improve quality of life, and advocate for their needs. 

Importantly, it shifts the narrative from ‘deficit’ to ‘difference’, ensuring that autistic people are valued and supported across society.

Key takeaways:

• Autism is a neurodevelopmental difference, not a disorder to be fixed
• Diagnosis provides access to tailored interventions, legal protections, and support networks
• Early diagnosis leads to better outcomes, but diagnosis at any age is beneficial
• The process involves thorough evaluation by clinical experts

Harbor London offers professional advice and assistance to help guide individuals and families on their journey. If you or someone you know is seeking clarity about autism, reach out today for expert services and support.

References 

1. https://www.cdc.gov/autism/signs-symptoms/index.html#:~:text=People%20with%20ASD%20often%20have,have%20some%20of%20these%20symptoms. 
2. https://www.autistica.org.uk/what-is-autism/autistic-strengths
3. https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/assessment-and-diagnosis/what-happens-during-an-autism-assessment
4. https://kids.frontiersin.org/articles/10.3389/frym.2021.554875
5. https://researchautism.org/oaracle-newsletter/why-accommodations-matter/
6. https://www.mentalhealth.org.uk/explore-mental-health/a-z-topics/autism-and-mental-health
7. https://www.autism.org.uk/advice-and-guidance/what-is-autism
8. https://www.verywellhealth.com/autism-timeline-2633213
9. https://www.autism.org.uk/advice-and-guidance/what-is-autism/the-history-of-autism
10. https://www.nice.org.uk/guidance/cg142#:~:text=Guidance,-Quality%20standard%20%2D%20Autism&text=This%20guideline%20covers%20diagnosing%20and,assessment%20is%206%20or%20above.
11. https://www.nidcd.nih.gov/health/autism-spectrum-disorder-communication-problems-children#:~:text=Teaching%20children%20with%20ASD%20to,to%20highly%20structured%2C%20specialized%20programs.
12. https://pmc.ncbi.nlm.nih.gov/articles/PMC9788721/#:~:text=This%20is%20similar%20with%20Day,the%20effect%20of%20the%20intervention.
13. https://www.autismcentral.org.uk/guidance/co-occurring-conditions
14. https://www.uclahealth.org/news/release/brain-changes-autism-are-far-more-sweeping-previously-known
15. https://pmc.ncbi.nlm.nih.gov/articles/PMC7359361/#:~:text=Smaller%20cell%20size%20and%20increased%20density%20of,observed%20in%20all%20ages%20of%20ASD%20individuals18.&text=An%20rsfMRI%20study%20observed%20altered%20functional%20connectivity,and%20social%20cortical%20regions%20of%20the%20brain91.
16. https://pmc.ncbi.nlm.nih.gov/articles/PMC10491411/#:~:text=Early%20identification%20allows%20for%20the,language%20development%2C%20and%20behavioral%20challenges.
17. https://www.bbc.com/news/articles/cy87542l14ro
18. https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext
19. https://pmc.ncbi.nlm.nih.gov/articles/PMC5813679/
20. https://www.hogrefe.com/uk/shop/autism-diagnostic-interview-revised.html