I carry out a lot of ADOS every week. I do all modules with children and young people from two and a half to twenty. In this blog post I am going to talk about some of the questions that families and professionals often ask about autism assessment for children and young people.
What is the assessment? What is the ADOS?
When a child is assessed for possible autism spectrum disorder, the process involves two to three parts (depending on whether the child is in an early years setting or school or not.) We need to have up to date information from school or early years setting, to tell us about the child’s strengths and difficulties in that environment. A pre-assessment questionnaire will be sent out these settings, which is designed to gather information on the core features of autism. For example, social communication and interactions, repetitive or restrictive behaviours, sensory interests, unusual use of language. The questionnaire will give clinicians information about the child’s functioning in that particular setting.
A developmental history should always be taken from the parents/carers. This is usually, but not always, carried out by a Consultant. This provides information on the child’s strengths and challenges from a young age and it provides a history of the child’s development. It opens a window for the professionals to see what the parent’s see, along with highlighting any atypical features of development. Some of the questions in the developmental history often particularly focus on the child’s skills at the age of four or five, as atypical development is the most pronounced at this age. In other words, it stands out more and is more obvious.
The third part of the process is an assessment carried out by a clinician. The clinician is usually a speech and language therapist or a psychologist, but it can be a Consultant. This is called an ADOS. It stands for Autism Diagnostic Observation Schedule. The ADOS is a play-based assessment that allows the clinician lots of opportunities to observe the child and look for core features of autism. Each task is very cleverly designed and all the items used are specifically chosen to suit assessment tasks and help the clinician to see if there are any difficulties with social communication, interaction and restricted repetitive behaviours. This assessment gives a snapshot of a child in a one-to-one setting. It mirrors the developmental history in that it is looking for similar information that the consultant is looking for in the ADI, e.g. use of eye contact, range of facial expression to communicate feelings, copying language, unusual sensory behaviours, such as licking or sniffing. The ADOS and the ADI fit together very well. Used together, the assessments give information on the child in different situations with different people. They provide information about the past and the present, which makes the evidence we base diagnosis on more robust.
Here are some best practice targets by the NICE (National Institute for Health and Care Excellence) guidelines:
- Consider the possibility of autism if there are concerns about development or behaviour, but be aware that there may be other explanations for individual signs and symptoms. [2011]
- Always take parents’ or carers’ concerns and, if appropriate, the child’s or young person’s concerns, about behaviour or development seriously, even if these are not shared by others. [2011]
When considering the possibility of autism, be aware that:
- signs and symptoms should be seen in the context of the child’s or young person’s overall development
- signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals
- when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment
- it is necessary to take account of cultural variation, but do not assume that language delay is accounted for because English is not the family’s first language or by early hearing difficulties
- autism may be missed in children or young people with a learning (intellectual) disability
- autism may be missed in children or young people who are verbally able
- autism may be under-diagnosed in girls
- important information about early development may not be readily available for some children and young people, for example looked-after children and those in the criminal justice system
- signs and symptoms may not be accounted for by disruptive home experiences or parental or carer mental or physical illness. [2011]
How reliable is this assessment, what if practitioners get it wrong?
Information from early years / school and parents is based entirely on their observations and interpretations of what they see. The information from these settings often differs, for various reasons. For example, many children and young people do not show how stressed or anxious they are when they are at nursery or school. They hold onto their emotions when they are outside the home, but when they are at home, in a safe place, they often let their feelings out. This can be extremely difficult for families. Early years or school often see, and report, different behaviours to parents/carers, and most clinicians are used to this situation. Research is always increasing our understanding and knowledge about autism, e.g. how it presents, different presentations in girls and boys, camouflaging. In the past, receiving different information from school and home was misunderstood in some settings as we did not know as much about the spectrum and different presentations of autism. Our knowledge base was narrower and this affected clinical decision making, unfortunately. However, this has changed now and professionals are unlikely to think that one source of the information is wrong, and the other is right. Carers and educational settings are reporting what they see, and what they see is different, because the child’s behaviour is not consistent.
For many parents, certain behaviours may seem to be the norm because they are used to them, and this might affect how they report certain situations. Experienced clinicians will unpick answers and ask further questions if they feel they need to. The developmental history is a tool, and it relies on the skill of the clinician using it to work out the responses of the carer and whether they need more information. Working in a multi-disciplinary team means that clinicians discuss their findings before reporting back to the families. This is an important process as it can reduce subjectivity and increase reliability, with different professionals contributing their own interpretations. The ADOS is an assessment that is a fantastic tool, and many practitioners are very experienced in using it, which helps them to notice little details and administer it effectively so that they can pick out features of autism that may otherwise go unseen. It is a specialised and complex assessment, that benefits hugely from a multi-disciplinary team to interpret findings. Every family and child are different, and as a result, every assessment is different. Autism presents differently in different families and children, so as a clinician you are always learning in this process, as autism spectrum disorder is so diverse and complex.
ADOS practitioners are supposed to attend at least three different reliability meetings annually, where practitioners watch a video of someone carrying out the ADOS, code the video, and check that they are all scoring in line with each other. This is a very very important part of our work as diagnostic clinicians. In any assessment there is room for subjectivity and attending reliability meetings reduces the likelihood of subjective opinions and interpretations of information.
If consultants and clinicians use assessments such as the ADI (Autism Diagnostic Interview) or the DISCO (The Diagnostic Interview for Social & Communication Disorders), these are scored. The ADOS is scored, and it has a cut-off point. When the child/young person scores above this point, they reach the criteria for Autism Spectrum Disorder. However, it is not always as clear cut as this. Sometimes children are borderline in their scores which makes things complicated. A school observation may be requested, so that more information can be gathered to decide if a diagnosis is appropriate or not. In very high functioning people, particularly girls, symptoms can be camouflaged, which means that they may not score in the ADOS. In these situations it really relies on the skill and experience of clinicians to put all the evidence together, and again, a school observation may be requested. Clinical decisions should never be based on the score of the ADOS alone. It is not sufficient and some people such as Tony Attwood feel that it is not a sensitive enough diagnostic tool, e.g. with girls. People were not as aware of this in the past, and girls and high functioning boys were perhaps more likely to be missed. Here is a link from Asperger’s Syndrome Foundation on: The Pattern of Abilities and Development of Girls with Asperger’s Syndrome Dr. Tony Attwood – September 1999 http://www.aspergerfoundation.org.uk/infosheets/ta_girls.pdf
What are the benefits of getting a diagnosis?
Many people feel, what is the point of getting a diagnosis? It can be hard for them to see that there can be any positive outcomes. Families worry about stigma and negative labelling, and this puts them off referring their child for assessment. This is completely understandable. We live in a society full of stigma, where people want to conform to the image of normality, sadly. Here are my top five reasons why having an autism assessment and getting a diagnosis can be positive.
- Many children that I see for assessment are misunderstood, misinterpreted and mislabelled. Usually, as naughty, rude, lacking empathy, uncaring, etc. This obviously has a negative effect on their sense of self and self-esteem and on their learning and ability to make and maintain friendships.
- They feel failure more than success in the classroom as the environment is not adapted to suit their style of processing information. People on the autism spectrum process information in a different way, e.g. sensory, emotional, cognitive, and need certain adaptations to help them reach their potential in a learning environment. When professionals, such as teachers, don’t know that the person is on the spectrum, they do not provide that support, and the child is unlikely to achieve what they are capable of achieving. I have met many young people on the autism spectrum who are extremely intelligent and bright but did very badly at school for these reasons. This can have an adverse effect on the rest of their life.
“Drawing autism”
- Young people can feel confused about their identity. They don’t feel the same as everybody else, yet they do not understand why. As they get older they can become more aware of difficulties communicating, making and maintaining friendships, managing emotions, but they don’t know why. This can make them vulnerable to increased levels of anxiety, depression and they can get the wrong support for their difficulties. For example, they may be referred to CAMHS, and get CBT (Cognitive Behavioural Therapy), but CBT only works for people on the spectrum if it is adapted for their style of thinking and processing.
- The stigma of neurodiversity in society is perpetuated by people being scared of it. The more scared people are of a label, and the more they avoid it, the more it is seen as a negative thing. In the past people used to feel this way about certain things such as being left-handed. I know people my age who had their left hand tied behind their back and were forced to write with their right hand. Why? It sounds like a crazy thing to do to someone. But in the past there was a strong prejudice against being left-handed. Now, luckily, as far as I am aware, there is not much of a stigma about being left-handed. Resisting a stigma reduces a stigma, but it is hard to do this as it means you have to expose yourself and your beliefs, which is not always easy to do.
- For many families with a child, who is likely to be on the spectrum one of the great difficulties is managing behaviour. Behaviour is a response to the situation, so the young person is often overwhelmed by their emotions and loses control, because of things that happen all day long, which are difficult for them to manage. Knowing that your child is on the spectrum enables families to get appropriate help to support their child and manage difficult situations. When families don’t know whether their child is on the spectrum or not they are not always able to put in place effective support. Understanding your child’s difficulties is key to helping them.
What are the negatives of getting a diagnosis?
I will try to think of some negatives to balance my positive list.
- There is a stigma, we all know it, and there is no point in denying it. People will view your child differently, yes, just as they do when any child is different, e.g. when they have physical differences, cultural differences. Anything that takes a child outside of what is considered to be the norm can be met with a negative response, unfortunately.
- I think that there is a time when it is a very difficult to give some young people, who are on the spectrum, the diagnosis. This is usually from about 12 or 13 up to 16 or 17. Young people are aware of the stigma by this age. They are trying to fit in with their peers, life is difficult for them and the very last thing that they want to be told is that they are on the spectrum. This makes them feel even more different and alienated from their peers. I think that the timing is important, and that there are some ages where the child can find the assessment process and outcome easier to manage and accept.
I cannot think of many more negatives. In my opinion, the diagnosis helps everyone to understand neuro-diversity. Children and young people on the spectrum are often very vulnerable. Understanding how autism presents and affects their life, will help them to find, and use tools that can help them manage difficulties and reach their potential throughout their lives. After the diagnosis, this new understanding and knowledge of your child’s difficulties and needs can make it hard to find the right school, the right nursery, and the right support for your child. You may need to make changes to their education, to your home life, which is hard to do. I don’t know where this point sits, it is not exactly a negative, but it is difficult.
What happens after my child has been given a diagnosis? What support will we get?
This is a difficult question to answer, as it depends on various things. Here is a link to the NICE guidelines pathway on Managing Autism Spectrum for 19s. There are treatment guidelines for children with co-existing mental health conditions, interventions for autism spectrum disorder and challenging behaviours.
Unfortunately, provision varies depending on where you live and the NHS provider. Funding has been cut to all NHS services, and areas such as Autism have been hit hard by these cuts. In many areas services run parent training sessions, e.g. Early Bird, Cygnets https://www.autism.org.uk/services/community/family-support/earlybird.aspx
https://b.barnardos.org.uk/hspss/le_hspss-asc.htm
Courses are carried out in groups, so you will meet carers in similar situations to your own. On these courses you learn about the core features of autism and key support that you can give your children. Carers say that they find it very helpful. Many trusts provide a follow up consultation about 6-8 weeks post diagnosis to discuss how things are going and how you are finding things. This can also be very helpful. In some trusts you may be able to receive some support from speech and language therapists for social communication difficulties, and occupational therapists for sensory and coordination difficulties. Your child can go onto the special needs register (with consent from the young person and carer when they are older.) This will mean that the school will be more aware of the support needed, whether that is subtle changes to the classroom to be able to access information more easily, or whether this is joining groups outside of the class. You can apply for Disability Living Allowance, and you can use this money to provide extra support for your child or to buy equipment that they might need. There are some local national autistic society support groups, and charities that provide support such as icontact in East Sussex, Kent Autistic Trust. A support group is a really good idea, because this is hard for parents, and they don’t always get much help. You will be given a lot of information on local services, such as cinemas that show films at certain times for people on the spectrum, and swimming pools with times specifically for people with autism. This can all be helpful information to have.
What happens if I don’t agree with the outcome of the autism assessment?
This happens, and I suspect that different clinicians handle this one in slightly different ways, but here is what can be done in a multi-disciplinary team when this has happened:
- Consultants can describe assessment findings in the report, but say that a diagnostic conclusion was not wanted by the parents. In other words, a description can be given of the observations made in the autism assessment, without a label attached.
- Consultants can talk about social communication difficulties, repetitive interests, rigid thinking, emotional regulation difficulties, but avoiding the word autism.
- Parents can request a second opinion. The NHS will always provide a second opinion, and you have the option of having that carried out locally or taking that to a national level and having that assessment done at an organisation such as the Evelina or the Maudsley hospital.
The NICE guidelines state that:
If any of the following apply after assessment, consider obtaining a second opinion (including referral to a specialised tertiary autism team if necessary):
- continued uncertainty about the diagnosis
- disagreement about the diagnosis within the autism team
- disagreement with parents or carers or, if appropriate, the child or young person, about the diagnosis
- a lack of local access to particular skills and competencies needed to reach a diagnosis in a child or young person who has a complex coexisting condition, such as a severe sensory or motor impairment or mental health problem
- a lack of response as expected to any therapeutic interventions provided to the child or young person. [2011]
- Sometimes Consultants say that they can take more time to think about the diagnostic conclusion, and they don’t release the report immediately. They ask the family to book another appointment in around 6 months-time to review the child and family’s situation. This can be helpful.
The outcome is dependent on the Consultant. Every team is different and has its own way of working, but I have seen each option happen when working as part of a multi-disciplinary team. I work with Consultants who are very respectful of families, and want this process to be helpful, not harmful. It can be a huge shock for families, and challenging to manage, particularly when these families come from countries where there is an enormous stigma around Autism Spectrum Disorder. The diagnostic process is about human life, and human beings, and certainly Consultants, who I choose to work regularly with know that.
I hope this information will be helpful. If you have more questions or find any of this confusing, please contact me and I will try to answer your questions.
Marilyn cosho
“drawing autism”