What Happens When Symptoms of Autism Do Not Receive an ADOS Diagnosis?
In my previous blog post I wrote about how the ADOS (Autism Diagnostic Observation Schedule) Assessment is used to diagnose autism and what to expect during the assessment. In this post, I want to write about children/young people who receive a borderline score or don’t score on the ADOS, and how these children can miss out on vital services that could help them. These children do not get a diagnosis, but in both cases family, school and the child/young person are affected by the symptoms of Autism Spectrum Condition and are left with no support. Their difficulties can impact on:
- Friendships and family relationships
- Behaviour, eg self-injurious behaviour and/or injurious behaviour to carers
- Learning and reaching their potential
- Self esteem
- Mental health
Meeting The Criteria for NHS Services
Schools and families are often unaware of how to support the child/young person. In these situations, the child/young person often does not meet the service criteria to be included on the NHS caseload for services such as Occupational Therapy, Speech & Language Therapy, or CAMHS (Children and Adolescent Mental Health Services). They and their families are left with no support. The difficulties that families experience are often glossed over and there is very little support available to them. These children/young people can slip through the net, but research shows us their difficulties are highly unlikely to resolve without appropriate intervention.
What Can Happen Without Intervention
In fact, the difficulties often grow, manifesting in increasing levels of anxiety, perfectionism, difficulties filtering out internal and external distractions, developing a fantasy world as a strategy to reduce anxiety and fear, misunderstandings in the playground, or arguments and fights etc.
Research has found that there is a strong link between ASC (Autistic Spectrum Condition) and mental health difficulties, e.g. depression, self harm, OCD, etc, yet families and schools can struggle to get appropriate help to prevent this.
Referral for Autism assessment (ADOS) depends on recognising symptoms and the need for further investigation. This is not always straightforward. The spectrum is a vast plain and everyone on it is an individual with a unique presentation. There are core symptoms, but they do not present in exactly the same way in each child/young person that is on the spectrum. Not only does assessment depend on knowing what you are seeing, but it also depends on the experience and knowledge of the clinician carrying out the ADOS.
The importance of skills and training for ADOS clinicians
The NICE guidelines https://www.nice.org.uk/guidance/cg128 recommend joint assessment so that this is not carried out in isolation. Furthermore, clinicians should attend regular reliability meetings, where everyone watches an ADOS being carried out, scores it and compares their score to the original to make sure they are all scoring roughly the same. Not going to these meetings can impact on the reliability of your scoring. When the ADOS is carried out without another professional, e.g. a consultant paediatrician, this can also affect reliability.
In many trusts, the ADOS is carried out by an experienced clinician who specialises in Autism so they are bringing all their experience and knowledge to the assessment. However, that is not always the case. For example, in some trusts, the ADOS is carried out by therapists with very little autism knowledge or experience. It is spread over a large number of therapists, but they do not do them on a regular basis that would allow them to develop their knowledge and skills. It is rotated over a large number of clinicians to try to get as many as possible done.
Case Study 1
J is nearly 10. He is articulate, bright and on the surface he does not look that different to his peers. However, he has not made friends and demonstrates little interest in his peer group. He enjoys talking to adults, and adults enjoy talking to him. He is not making expected progress at school. He does not engage with topics unless they interest him. He has a strong interest in computers and spends a lot of his time at a screen. He talks a lot about computer games. He can be hard to follow, as he does not give sufficient background information for the listener to understand. He has a reduced awareness of the listener, he does not notice if he has talked for a long time or if they look uninterested or lost. It is hard to have a reciprocal to and fro conversation with him. He talks a lot, but it is on his terms, around his interests and is one-sided. He often says inappropriate things and has no awareness of the impact on others. As he gets older these subtle social difficulties are more observable and have more impact.
J uses a lot of repeated language, e.g. phrases and words he has heard in programmes, which sound off and can be repetitive. However, when he was referred for the ADOS, he did not meet the criteria for a diagnosis of Autism Spectrum Condition. Further assessment is planned with J and hopefully this will highlight difficulties.
J has never had any input from services or support and it has taken until he is nearly 11 to consider if there is an underlying difficulty that might explain his behaviour and lack of progress. Children with these difficulties can often manage at primary school, but secondary school is a very different experience and the strategies and support that they are used to is often no longer available. The environment is larger, more chaotic and challenging as lessons are in different classrooms, teenagers are more unpredictable, and academic and social demands increase. Difficulties at secondary school are well documented in the literature on autism.
Case Study 2
H, in many ways, has a similar profile to J. Both are perhaps not what people expect to see when they think of ASC. Both are bright enough to have developed some coping strategies that mask the difficulties they are experiencing. Both have acceptable areas of interest, common to many children, so they do not stand out. Both can make eye contact and demonstrate different facial expressions. Both, on the surface, are not that different to their peers. H is talkative, like J, and supposedly sociable although that has been called into question over the last couple of years.
School have been trying to understand H for a long time and found him hard to fathom. He started to have increasing difficulties in the playground, with more and more misunderstandings. He was quick to feel he had been treated unfairly, which led to arguments and fall-outs. He found it hard to see the bigger picture and to consider what others might be thinking and feeling. He could only see things from his own perspective. What had once been seen as creativity became unusual and extreme. H slipped deeper and deeper into a fantasy world, but it revolved around computers, so to those meeting him for the first time, his interest seemed normal. His family became increasingly concerned. School became increasingly concerned.
Sometimes H dressed up as characters from games he liked, sometimes speaking like them. School did not know how to understand him. He made little progress and had huge difficulties concentrating. He found it harder and harder to filter out internal distractions, thoughts about computer games. H put an elastic band around his wrist and when he was really struggling to listen, he would ping it against his flesh, hoping the shock would bring him back to the classroom, away from his thoughts about computer games. H was confused, and he could not work out what was happening.
He was referred for autism assessment. However, he was diagnosed as being emotionally immature for his age and as having literacy difficulties.
When H went to secondary school, everything fell apart for him. He has since been put on the waiting list for the ADOS.
My Own Experience, Both As An ADOS Clinician And As A Parent
I carry out the ADOS in the course of my own work as a speech therapist. It is a very complex assessment – it looks easy when you watch it, but it is not. The clinician has to be incredibly observant, to know what they are looking for, to hold the scoring categories in their mind throughout the process, whilst trying to get the best out of the child/young person. It is an assessment that requires knowledge and experience of the Autism Spectrum and the ability to recognise what can be subtle or unexpected symptoms.
All assessors are fallible, of course, that is why we must take as many precautions as possible to be as objective as we can. That is why supervision is important and why it is important to work with other professionals. It is a mistake to think that anyone can do this assessment, that it is straightforward and simple. I have been on the receiving end of that. We had to wait many years until finally a highly experienced clinician saw my child and recognised what we had suspected for a long time but had been told was out of the question. Inexperienced clinicians, who thought that this area was simple, led to my child attempting to take their life. This is a serious condition that can have serious consequences when it goes unrecognised. It is a serious job to be involved in diagnosis of any condition and none of us want to get that wrong.