New to autism?

A straightforward introduction to what autism is, how it presents across different people, and what to do next if you are exploring a possible diagnosis in Scotland.

Reviewed by ADHD Scot,

What is autism?

Autism is a neurodevelopmental condition that affects how a person experiences and interacts with the world. It involves differences in social communication, sensory processing, information processing, and patterns of thinking and behaviour. These differences are present from early in development, though they are not always recognised until much later in life.

SIGN 145 describes ASD as "a lifelong condition in which the core features persist whilst manifesting differently according to different age stages", with a prevalence "around 1% of the population in the UK".

The clinical name is Autism Spectrum Disorder (ASD), the term used in DSM-5 and in clinical guidelines such as SIGN 145. You will see both "condition" and "disorder" in everyday use. On this site we use "autism" or "autistic" as the preferred shorthand.

What the spectrum actually means

Autism is often described as a spectrum, but this is frequently misunderstood to mean a straight line from mild to severe. It is better understood as a wide range of different profiles: people vary in how their autism presents, which areas it most affects, and how much support they need in different contexts.

SIGN 145 notes that a diagnostic assessment may need observation "in different settings, for example at school" as well as in the clinic, because it may not be possible to obtain enough evidence in one session.

The key areas

Autism is commonly described in terms of the three groups of features below, though these interact and overlap in different ways for different people.

Social communication and interaction: Autistic people often process social cues differently. This may mean finding unspoken social rules confusing, preferring direct communication, finding small talk difficult or draining, or connecting more naturally in structured or topic-focused settings than in open social situations.

This is not a lack of desire for connection. Many autistic people form deep, meaningful relationships. The difference is often in the form those relationships take, and in the effort required to navigate social environments built around neurotypical communication styles.

Restricted and repetitive patterns of behaviour and interests: This includes strong, focused interests that can become areas of significant expertise; preference for routine and predictability; difficulty with unexpected change; and repetitive movements or behaviours (sometimes called stimming) that help with self-regulation.

These traits are often experienced as stabilising and positive. The difficulty arises when environments or expectations do not accommodate them.

Sensory differences: Autistic people may experience sensory input such as sounds, textures, lights, smells, tastes, and physical sensations as more intense, less intense, or simply differently processed. Sensory differences are included in the DSM-5 criteria for autism.

How autism presents in adults

Experiences that autistic adults describe include the following (descriptions, not diagnostic criteria):

  • Exhaustion from social interaction: not because of introversion, but because of the cognitive effort of processing and responding to social expectations
  • Masking: suppressing autistic traits to appear neurotypical. A 2017 qualitative study of 92 autistic adults identified "exhaustion" among the consequences of camouflaging (Hull et al., 2017)
  • Difficulty with change and transitions: particularly unexpected ones, or situations where the rules are unclear
  • Strong interests that are deeply absorbing and meaningful, sometimes running counter to what others expect
  • Sensory sensitivities that affect daily choices around clothing, food, environment, and noise
  • Preference for clarity: some autistic people prefer clear rules and direct communication
  • Difficulty with executive function: planning, sequencing, prioritising, and task-switching, which some people with ADHD also describe

Some adults reach a diagnosis only after years of being told they are too sensitive, socially awkward, inflexible, or difficult. SIGN 145 says "The number of females presenting with ASD is consistently under-reported due to misdiagnosis".

How autism presents in children

In children, autism may be more visible through social interaction differences, sensory responses, and communication patterns. However, the presentation varies enormously by age, personality, and environment.

SIGN 145 says ASD "is recognised more commonly in boys than girls, at a ratio of approximately 4:1, although this varies across the spectrum", and recommends that healthcare professionals "consider that females with ASD may present with a different symptom profile and level of impairment than males".

Signs that are sometimes missed include: intense focus on specific topics or objects; following rules very literally; difficulty with group play and unstructured social time; sensory responses that look like behaviour problems; deep distress at routine changes; and very precise or formal use of language.

How autism shows up in women and girls

SIGN 145 says females with ASD may present with a different symptom profile than males, and gives a possible explanation for under-reporting: "the instruments used are not sufficiently sensitive or specific enough to identify ASD characteristics in females". It also says "Research regarding the possible different symptom profile of females is in its infancy".

Masking and social camouflage

Some autistic girls and women describe working hard to fit in, for example by watching others, copying mannerisms and phrases, and rehearsing conversations. Research on this is summarised below.

A 2016 study by Bargiela, Steward and Mandy gave in-depth accounts from fourteen women aged 22 to 30 who were diagnosed with autism in late adolescence or adulthood. The women described "'pretending to be normal'" and "how their gender led various professionals to miss their ASC". (Bargiela S, Steward R, Mandy W. The experiences of late-diagnosed women with autism spectrum conditions. Journal of Autism and Developmental Disorders, 2016.)

A 2017 qualitative study by Hull and colleagues of 92 autistic adults identified motivations for camouflaging ("fitting in and increasing connections with others") and consequences that included "exhaustion, challenging stereotypes, and threats to self-perception". (Hull L, Petrides KV, Allison C, et al. Putting on my best normal: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 2017.)

The problem with "high functioning"

You may have come across autism described as "high functioning" or "low functioning". Some people and organisations object to these labels because they describe how someone appears rather than what they need. Someone who appears to be coping can still have support needs.

The SIGN 145 guideline (the Scottish clinical guideline for autism assessment) recommends that healthcare professionals consider that females with ASD may present with a different symptom profile and level of impairment than males.

Misdiagnosis

SIGN 145 says the number of females presenting with ASD "is consistently under-reported due to misdiagnosis".

If you have received diagnoses that have not quite explained your experience, you can raise the possibility of autism with your GP.

Burnout

"Autistic burnout" is a term used by autistic people and researchers for a period of exhaustion, withdrawal and loss of function. It is not a formal diagnosis, and we have not checked a primary source for its causes or how often it precedes a late diagnosis.

ADHD and autism

ADHD and autism can occur together. A 2020 UK expert consensus (Young et al.) says that in children, clinical studies investigating ADHD symptoms in autism report "a co-occurrence ranging between 53 and 78%", compared with "28–31%" in community samples, and that a meta-analysis of autism symptoms in young people with ADHD found "a comorbid rate of 21%".

The community term "AuDHD" means a person who has both autism and ADHD. It is not a formal diagnosis.

See our dedicated AuDHD page →

What to look for in a private autism assessment

Autism assessment varies considerably between providers. Knowing which tools a good assessment uses helps you ask the right questions before you book.

ADOS-2 (Autism Diagnostic Observation Schedule, Second Edition), a structured observational assessment. SIGN 145 says the ADOS-G, which it notes has been updated to ADOS-2, "can be used to supplement clinical history".

ADI-R (Autism Diagnostic Interview, Revised), a structured interview. SIGN 145 refers to a combination of ADOS and ADI-R.

DISCO (Diagnostic Interview for Social and Communication Disorders), a diagnostic interview. We have not checked a primary source for how it is used by providers.

AQ and RAADS-R, questionnaire-based tools that you complete yourself. SIGN 145 says ASD-specific instruments "may be used to supplement the process of clinical observation, as part of the diagnostic assessment".

SIGN 145 says "Assessments of individuals for ASD cannot be rushed", and recommends "A diagnostic assessment, alongside a profile of the individual's strengths and weaknesses, carried out by a multidisciplinary team which has the skills and experience to undertake the assessments".

Preparing for an autism assessment

Preparation is worth doing. The assessment itself can feel pressured, and having thought things through in advance means you are better placed to give the clinician an accurate picture.

Think about childhood. Autism has to have been present from early in development, even if it was not obvious. Think back to how you were as a child: did you find group play confusing, prefer to stick to specific rules, find unstructured social time exhausting? Were there strong interests that others found unusual? Did you find change harder than other children seemed to?

Think about what you mask. It can help to think about what you do privately versus publicly, what exhausts you, and what you do to prepare for social situations that others seem to do automatically.

Ask for developmental information. If a parent, sibling, or other relative can recall details of your early childhood, particularly around language development, social play, and how you were described by teachers, this is genuinely useful. Some assessments include a collateral interview specifically for this.

Consider your sensory needs on the day. Assessment environments can be clinical and unfamiliar. If you have sensory sensitivities, it is fine to let the provider know in advance, ask about the environment, and bring anything that helps you regulate.

Write down your questions. Assessments can move quickly and it is easy to forget things. A short list of questions gives you something to refer to and makes it less likely you will leave feeling like you did not say what you wanted to say.

Trusted further reading

ADHD Scot is an independent, non-clinical information project. Nothing here is medical advice. If you think you or your child may be autistic, the right first step is a conversation with your GP.