What is the correct terminology?
The current correct medical term is Autism Spectrum Disorder, often shortened to ASD and often abbreviated to autism when we are being less formal. It is an umbrella term used to describe all the different types of presentation.
One challenge when discussing autism is that there are so many different words used by professionals, often seemingly interchangeably when talking about this condition. Autism, Aspergers, Autism Spectrum Disorder, Social Communication Disorder, Pervasive Developmental Disorder, ( PDD) and Pathological Demand Avoidance to name but a few. This is due to changes and evolutions in diagnostic criteria as we learn more about the condition.
Previously it was felt that sub-dividing the condition into different types would be useful, to help provide more tailored support. It is now widely recognised that everyone with ASD has different difficulties and strengths and therefore different needs at different times. The most useful way to support this group of people is to think about them as individuals rather than clumsily trying to make their features fit a pattern.
It is now recognised and accepted that the difficulties experienced by people with ASD (now known as autistic people) are on a spectrum, but that all the features should be considered in all people with ASD as they will be there for all.
Some people may be on the very mild end of the spectrum and their difficulties may only need consideration at specific times such as in a supermarket with lots of noise, smells, different people and unpredictable events, where as other people may have profound sensory needs. All the features of ASD can impact on the lives of those with ASD and therefore shouldn’t be minimised. Conversely – some people considered to be more severely affected can amaze us with the way they can manage in situations that we might predict would be challenging.
Neurodevelopmental disorders in the UK are diagnosed using either the ICD (International Classification of Disease) or DSM (Diagnostic and Statistical Manual of Mental Disorders) classifications. These classifications are updated every few years (hence the changes in diagnostic criteria and terminology) and thus some of the terminology is out of date and does not refer to a recognised medical diagnosis. For example, PDA (Pathological Demand Avoidance) is not a recognised diagnosis in these classifications and thus not a medical diagnosis and not a diagnosis made by Doctor Kate.
What is Autism?
Autism used to be considered to be a triad of disorders
- Impaired Communication
- Impaired Social Skills
- Restrictive and repetitive ways of being in the world
This triad has now been merged to be
- Social communication deficits
(combining social and communication skills) - Restrictive and repetitive behaviours
Social communication
Communication is the term used to describe an exchange of information between people. Social communication is the use of language in social context and is broken into 3 parts
When we are considering if a child has ASD we look very carefully at all these areas. We will gather information from you, your child's school, by talking to your child, observing them and in formal assessments such as ADOS 2, which we use at Doctor Kate.
The ADOS 2 is a very structured way of gathering information through standardised tasks and looks to understand a child's overall social communication skills.
We want to understand how your child’s communication developed, from when they were first born. We want to understand your child’s level of learning (cognitive skills) and their speech and language skills. If a child has a language disorder or a learning difficulty this will affect their social communication. We therefore need to understand their social communication in context of their other skills.
The meaning of a communication exchange can shift just by a small change - phrases such as ‘Yes, fine’ can mean so many different things depending on how it said. In a cheery voice we know it really is fine, in a resigned grumpy voice it really doesn’t mean it is fine.
We want to know how your child views and values the exchange of information and communication and if they are interested in the listener and can use their social communication skills to ask for help, or ask for more information about the other person.
Non-verbal communication is also really important in social situations - understanding someone else’s feelings by their body language, tone or facial expression. Noticing if someone is happy, sad or cross by their facial expression, or using your own facial expression to express your feelings – being cheeky or charming to try not to get into trouble. Can your child let you know what they want with their eyes and facial expression? Can they look at you, the thing they want and then back at you to make sure you know what they have seen? Can they follow your eye point to see what you are interested in?
Social communications is also the area that looks at how your child understands and values relationships and social interactions. Understanding the difference between friends, class mates, an acquaintance, a senior, or a stranger are all important social communication skills.
Restrictive and Repetitive Behaviours
These are the features that are most readily associated with ASD as they are often the easiest to spot.
They can involve repetitive stereotypical motor movements such as flapping, or lining objects up, or repetitive speech. It can refer to a need for sameness – such as routines, activities and routes to school. They can be socially disruptive and the need to do them can prevent the person engaging in other activities such as learning.
There is still very little good evidence as to the cause or role of these activities for people with ASD. Often they occur when the person is feeling anxious and can be a way for the person to reduce their anxiety. Sometimes they occur at times of excitement and enjoyment. Often asking a person to stop them can increase their anxiety. Thus in managing them it is important to identify – are they doing them because they are anxious and we need to identify and address the cause of anxiety, or are they doing them because they are helpful to reduce their levels of anxiety.
Often people with ASD struggle to understand the world around them due to their difficulties with social communication. Putting in a routine helps their understanding of the world around them and thus reduces anxiety.
It can be helpful to think of ASD as a disorder of imagination. We use our imagination to help us understand the world, and people around us and to transfer knowledge and skills from one setting to another.
We use clues in the environment and non-verbal communication with our imagination to understand what is happening – if we see our swimming bag by the front door we can imaging were we might be going, and if we notice that the phone has just rung we can imaging we will have to wait a bit longer before we go. Autistic people find it really hard to do this and thus often feel very out of control in their environment. Therefore putting in routine can help make the world feel more manageable.
One young person with ASD explained in clinic that their world feels like a jigsaw puzzle and not knowing where to start. By putting in place all the edge pieces they could then cope with making the rest of the puzzle. They explained that routine to them was like having the edge pieces in place to make the world manageable.
Might my child have Autism?
All 3 of the words in the diagnosis Autistic Spectrum Disorder are important.
We have discussed the difficulties that people with autism have. It is important to remember that these features are on a spectrum, and we all have some features of autism at different stages of our life in different settings. When we feel out of control we all feel anxious, and putting in place some routine and structure can help manage this. Similarly, there are times when our social communication skills are better than others, and there are Neuro-typical people at both ends of this spectrum. The features of ASD are also typical at different developmental stages.
- Dr Kate Martin will link with the team of skilled and experienced educational psychologists to see if your child needs further evaluation by them.
- Dr Kate Martin will link with Zoe Macklin Day – a senior and skilled Speech and Language Therapist and Senior Autism Practitioner who has also been working in the NHS for of over 25 years and will be able to assess if your child needs a further Speech and Language assessment prior to further investigations for ASD.
- It may be that at this stage the team feel we need to gather more information from you and or school.
Once we have a full and robust understanding of who your child is and understand their developmental history and profile we can complete the assessment process by undertaking an ADOS 2 assessment. This will be undertaken by Dr Kate Martin and Zoe Macklin Day together with your child.
After the assessment we will be able to confirm or exclude the diagnosis and you can be confident that your child has had a holistic, multidisciplinary assessment. We will share with you your child's profile of strengths and needs. We will ensure that you understand the report, how your child sees the world and functions within it and how best to support them. We will then signpost you to resources, and we will ensure you understand the services and pathways around you to feel empowered to navigate the next steps with your child.