Understanding Autism

Autism is a lifelong neurodevelopmental condition that can influence how a person communicates, interacts with others, processes information, and experiences the world around them.

It is often described as a spectrum because autistic people have different characteristics, experiences, strengths, and support needs.

However, being a spectrum does not mean that every autistic person experiences the same challenges to a greater or lesser degree. Two autistic people may have very different communication styles, sensory experiences, abilities, and support requirements.

Some autistic people live independently, while others need substantial or lifelong support with communication, daily activities, safety, and participation in their communities.

Understanding these differences is essential.

At This Little Light Of Mine, we believe that learning about autism should help us understand people better, not reduce them to a list of characteristics or assumptions. Our own family experience has shown us how important it is to look beyond what is immediately visible.

The term profound autism was proposed in 2021 by the Lancet Commission on the future of care and clinical research in autism, an international group of clinicians, researchers, autistic people and family members. It describes autistic people who need access to an adult who can care for them at all times, and who are often minimally speaking or non-speaking and may also have an intellectual disability.

It is meant as a descriptive term to help plan support and services, not a separate diagnosis. Researchers are still refining exactly how it is defined, and the term is not used or accepted by everyone in the autism community. It should never be treated as a complete description of an individual.

People described as having profound autism are not all alike. Their abilities, preferences, communication methods, and support needs can differ significantly. For some, support may be needed throughout their lives.

Understanding profound autism means recognising the importance of individualised support, accessible communication, safety, dignity, and quality of life.

It also means understanding that a person's worth does not depend on how independently they can live, whether they speak, or how much support they require.

Communication is about more than speech.

Some autistic people communicate through spoken language, while others use gestures, facial expressions, body movements, communication boards, picture-based systems, speech-generating devices, or other individualised methods. Some people use several methods depending on the situation.

A person who does not speak may still communicate preferences, discomfort, interest, emotions, or a desire to engage with the world. The methods available to them will depend on their individual abilities and support needs.

For our family, non-speaking autism has helped us recognise how important it is to look beyond spoken responses. We have also learned to appreciate the importance of patience and understanding when responses are delayed.

At the same time, we cannot assume that every person understands every instruction or situation. The most respectful approach is to learn how that individual communicates, allow appropriate processing time, and provide support that meets their needs.

Communication should always be approached with dignity, patience, and a willingness to understand.

Sensory experiences can have a significant effect on everyday life for some autistic people. Sounds, lighting, textures, smells, movement, crowds, and unfamiliar environments may be experienced differently from how other people experience them.

Some people are particularly sensitive to certain sensations. Others may seek particular sensory experiences. A person may also experience different sensory needs in different situations.

What appears to be a simple everyday activity can become difficult when an environment is uncomfortable, unpredictable, or overwhelming.

Understanding sensory differences can help families, educators, businesses, and communities make practical adjustments. These might include reducing unnecessary noise, providing access to a quieter space, preparing someone for changes, or allowing additional time to become familiar with a new environment.

The most appropriate support will depend on the individual. Rather than assuming what someone needs, it is important to learn from the person, their communication, and those who understand their support requirements.

Autism and attention-deficit/hyperactivity disorder, commonly known as ADHD, are distinct neurodevelopmental conditions that often occur together. Both can influence everyday experiences, but they do not affect everyone in the same way.

Autism may involve differences in social communication, sensory processing, routines, and patterns of behaviour or interests. ADHD may involve differences in attention regulation, impulse control, and activity levels.

When someone has both, their support needs may be shaped by the interaction of these characteristics. For example, a person may benefit from predictable routines while also needing support with attention, transitions, or managing competing demands.

The important thing is to understand the individual rather than assume that a diagnosis tells us everything we need to know.

Some autistic people need additional time to process information, understand a question, interpret an instruction, or formulate a response. This can be especially important in a busy environment or when several instructions are given at once.

A delayed response may be misunderstood as ignoring someone, refusing to cooperate, or not understanding. However, there can be many reasons why a person does not respond immediately.

Allowing additional time, using clear language, reducing unnecessary distractions, and avoiding repeated questioning can sometimes make communication easier.

For a non-speaking person, it is also important to understand the individual's established communication methods rather than relying solely on a spoken answer.

There is no universal response time that applies to every autistic person. Learning what works for the individual is essential.

Creating a more understanding environment does not always require major changes. Often, it begins with a willingness to learn and adapt. Here are some useful principles:

When we understand autism better, we can begin to change the way we respond to people.

Families may feel more supported. Educators may identify more appropriate ways to help students participate. Businesses may become more willing to consider adjustments and opportunities. Communities may become more welcoming to people whose communication or support needs differ from their expectations.

Understanding does not mean knowing everything. It means being willing to learn, recognising that our assumptions may be incomplete, and treating people with dignity.

That is the kind of understanding we hope to encourage through This Little Light Of Mine.