In support of World Autism Awareness Week, we speak with Dr van Zwanenberg (MBBS, MRCPsych, MMedSci), Consultant Child and Adolescent Psychiatrist, to understand autism further. Autism is a complex condition that affects social interaction, communication, interests and behaviour in both children and adults. In order to ensure that every autistic person receives the correct care and support throughout their life, it is important that the signs of autism are recognised and condition is diagnosed as early as possible.
Autism affects 1 in 68 children in the UK, with 4 boys being diagnosed for every 1 girl. Diagnosis is often based on observation of atypical behaviours and although there is evidence to suggest that autism can be inherited, no single genetic cause for autism has ever been identified. This makes it all the more difficult to identify and diagnose.
Autistic children can present in many different ways. In a GP surgery, you are likely to encounter the following, which may indicate to you that a child is autistic:
- Presenting with 'meltdown' like behaviour
- Showing defiance at home and at school
- Having difficulty making friends
- Anxiety and stress is evident in the child, triggered by life changes
- The individual presents with selective mutism
- Parents feel their child is acting differently
Being diagnosed with autism can be an extremely daunting time but this is the first and most important step. Explain that the diagnosis will be beneficial to all involved and will help the child and the family to feel safe, comfortable and informed. Other important things to consider include:
- Offering the child as much structure as possible at home, school and at the GP surgery
- Giving as much warning as possible if there will be changes in usual routine
- Providing visual templates to explain changes in routine or plans
How is autism likely to present in your surgery?
The most common psychiatric and cognitive co-morbidities that are identified with autism include:
- Social anxiety disorder
- Oppositional defiant disorder (ODD)
- Attention deficit hyperactivity disorder (ADHD)
- Learning disability
11-39% of autistic people also have epilepsy and these individuals are more likely to have severe social impairments than people who are diagnosed with autism only. Co-morbid sleep disturbance is also indicated in 50-80% of autistic children and is correlated with daytime problem behaviours.
Why is it important to diagnose autism and how do you persuade parents of this?
It's so important to diagnose autism; not getting a diagnosis can make so many areas of life difficult, distressing and bewildering for the undiagnosed person. This can result in difficult behaviours, social isolation and young people who do not attain their best in school. Once diagnosed, the young person can understand themselves better and realise they are not alone in the way they feel. Their parents and the professionals working with them can all learn how best to help them. The right autism support services can be accessed and adaptations can be put into place in the educational setting. A diagnosis can prevent so much distress as the child develops, and can stop further psychiatric illnesses developing. Some autistic young people also benefit from medication to help with anxiety or low mood, or to help manage some behaviours, but these would need to be prescribed by a child and adolescent psychiatrist.
It's important to explain to parents and young people that there are so many positives about autism. Some of the most successful people in the country have a diagnosis of autism. They can still achieve whatever they wish in life. Autistic people often make really loyal friends but may have a smaller group of friends. They become good employees, because if they work in their areas of interest, they know all there is to know about the subject. They think about problems in a different way and often find unique solutions.
Signs to look out for if you are concerned about a child in your surgery
- Does the child play imaginatively? Ask what the child plays with and how they play with the toys. Often, autistic children play in the same way most of the time; they don't make up a variety of stories, put on voices or role play. If they do play imaginatively, it's often copied off the television or a sibling and is very repetitive. They may enjoy lining toys up or putting them in sets
- Does the child seek to mix with children their own age and do so appropriately? Often, autistic children prefer to play on their own and watch other children their age from a distance. They may struggle to share with others, take turns, lose a game and only approach other children to take something off them or to insist they play the game they want, by their rules. Birthday parties or group activities can be particularly difficult for them
- Does the child become quite obsessive about their interests, almost to the exclusion of other topics or toys? They may talk repetitively on their topic of interest but find it hard to have conversations about other things or to make small talk
- Making appropriate eye contact can be very difficult for some young people with autism. Often, these young people don't have a variety of gestures, such as descriptive gestures (e.g. moving their hand to demonstrate a drink when they are thirsty), emotional gestures (e.g. patting friends on the back to say well done), instrumental gestures (e.g. pointing to demonstrate what they want or to share interests), and a limited variety of facial expressions
- How does the child cope with change? Autistic children often find change in plans very distressing - perhaps they find new clothes or new shoes difficult to cope with, and even small changes in the environment at home can cause distress. Holidays somewhere new can be particularly difficult, as there is so much change and a different routine
- Autistic children usually like routine - they may insist on the same seat at the dinner table or the same plate to eat off. They may wish for things to happen in the same order, for example at bedtime, or they may insist parents say the same words each night a certain way
- Autistic children often have some form of sensory sensitivity. There may be certain noises that really upset them or they may be irritated by washing labels in clothes, or certain textures of clothes. They may also be fussy over food due to the dislike of the texture. You can read more about this in our ARFID and autism blog
How is autism diagnosed?
There is not a 'gold-standard' test for autism. Usually diagnosis involves:
- A psychiatric assessment to rule in or out other diagnoses
- A very detailed developmental history to ascertain autistic traits from a young age
- An autism diagnostic observation schedule (ADOS) which takes about an hour with a clinician and the patient, interacting and doing tasks together so the clinician can observe the young person's social interactions, communication, emotional understanding and imagination
What advice can you give in your clinic?
- To accept a referral for a diagnostic assessment - the diagnosis will be beneficial, not detrimental, and there are many risks for the young person if they have undiagnosed autism that can be reduced with a diagnosis
- To allow the young person as much structure as possible at home and at school
- To give warning as much in advance as possible if there will be a change to their routine at school or at home. This includes a change of seating in school, if there is a different teacher, if the plan for the afternoon timetable changes and so on
- Offer visual timetables to explain their structure and routine on a daily basis and talk through any changes to this with them and repeat this as much as possible. If there is a school trip, they need a visual timetable of this, ideally a week in advance, that they talk through each day
- To ask the school to offer social stories and emotional literacy work on a 1:1 basis to the young person. Social story books and emotional literacy books for autistic children can easily be sourced online
- Parents could contact the national autistic society at www.autistic.org.uk to gather more information and advice regarding sourcing a diagnosis and how to help their child while awaiting a diagnosis
What can specialist services such as Priory offer?
Priory is in a unique position as it offers services throughout the lifespan of people with autism. Services are available to offer a diagnostic assessment but we also offer treatment plans within our young people's services and residential services for autistic adults.
Once a diagnosis is made by a consultant psychiatrist, for adults or young people at Priory, clear recommendations are made. Post diagnosis follow-up is offered, often involving family therapy to help with psychoeducation regarding which behaviours are due to autism, which are not, and how to manage all unhelpful behaviours.
In some cases, medication may be used and this can be prescribed and safely monitored by Priory clinicians, while ensuring the medication is leading to positive outcomes.