Does my child have ASD?
We worry about our children. It is normal to be anxious about everything they do. To notice every tiny detail and, secretly, to be aware of how they compare with the other children we have or whom we know. When they are very small we know, down to the day, when they hold their heads up and look around: when they first roll over on their own, when they first crawl, first stand, first walk, first talk….
However, at the same time, we can be remarkably blind. Sometimes we don’t notice things because we think they are ‘normal’, or because others tell us not to worry. Sometimes it is that we just do not want to admit something might be ‘wrong’, even to ourselves. It might even be that a parent thinks that there is no issue because “I was like that too!”
Can a diagnosis of Autism in children and adolescents be done online?
Working with young people is always more complex than with adults. This has always led to us being very cautious as to deciding what we can and cannot do with children and adolescents when providing services over the internet. There are circumstances, and individuals, for whom online assessments are not suitable. However, on the other side of the argument, many young people, especially those with some of the traditionally well known traits of autism, are not only very comfortable online, it is how they prefer to interact with the world! We have therefore been looking at what we can do to look at what we can do to help parents who are seeking to get a better understanding of the extent and nature of their child’s autism. We need to be sure that we are doing it properly.
Psychiatry-UK is a chamber of Psychiatrists. According to the current NICE guidelines, the diagnosis of ASD in under-19s must be made in a multidisciplinary way, from a team that consists of a Child & Adolescent Psychiatrist, a Speech & Language Therapist (SaLT) and a Clinical and/or Educational Psychologist. Until recently, we have refused requests for ASD assessments due to lack of access to suitable complementary professions. However, with this in mind, we have teamed up with the OWL Therapy Centre to provide an online service for assessment of possible ASD in children and adolescents.
PUK and OWL
The Owl Centre*, specialises in ASD assessments and therapy services. They include Speech & Language Therapists, Occupational Therapists and Clinical Psychologists, but not Child & Adolescent Psychiatrists.
The two organisations are therefore entering into a partnership. Currently, PUK operates almost exclusively via video-link: its core business is telepsychiatry. In contrast, OWL operates a face-to-face service. To enable this, OWL has bases in many parts of England and Wales. We do not believe that the full assessment of a child with possible ASD can be completed without at least one face-to-face meeting with the child—to explore, for instance, the nuances of non-verbal communication and social interaction.
* The OWL Centre offers school or home visits throughout Bedfordshire, Berkshire, Buckinghamshire, Cambridgeshire, Gloucestershire, Greater Manchester, Hampshire, Hertfordshire, Kent, Central London, North London, North West London, South London, Northamptonshire, Oxfordshire, South Wales, Surrey, West Midlands and Worcestershire; and in parts of Herefordshire, Warwickshire and Wiltshire.
A pathway for completing a thorough assessment
The figure shows the diagnostic pathway that the assessment is designed to follow, with relevant costs.
Entry into the pathway requires some autistic features in the Developmental History: to save you money, a form with lots of questions will be sent to you to fill in, preferably by typing, and return to us. The Psychiatrist doing the initial assessment must agree that ASD assessment is appropriate: if they think the diagnosis is very unlikely, then it would be unfair to put the child through a lot of assessments, and to charge you a lot, for no purpose. A high score on the above screening questionnaire is not essential.
The rationale for a multidisciplinary approach is that information must be ‘triangulated’ from different sources and perspectives. The assessments in the middle line of the diagram are almost essential.
- There must be some information from school – questionnaire answers and/or Classroom Observation – but this will not be available from anyone who is out of school, although opinions from a past school should be sought. Sometimes the questionnaire information will be enough; if this is inconclusive, then a Classroom Observation may be needed.
- The ADOS (Autism Diagnostic Observation Schedule) is a research-based structured assessment of the individual child, with built-in scoring, which requires intensive training to carry out. Despite the views of some, it is by no means infallible, so it would be a mistake to rely on it too much. In a few cases, it may not be necessary, if the evidence for an ASD diagnosis is convincing without it. However, most independent organizations, including ours, are reluctant to complete an ASD assessment without the ADOS, since this could invite criticism from other professionals. The ADOS can be done: at one of OWL’s offices; at the child’s home; or after the Classroom Observation at the same school visit.
- Some independent assessment teams use a highly structured and detailed research-based interview administered to the parents – Such as: the ADI (Autism Diagnostic Interview); DISCO (Diagnostic Interview for Social and Communication Disorders; or 3di (Developmental, Dimensional and Diagnostic Interview). This is very time-consuming, and therefore costly for you. We believe that the same quality of information can be obtained from detailed questionnaires. Combined with the Developmental History, the Checklist for Autism Spectrum Disorder gives much essential information that can be very helpful in reaching a diagnosis.
As indicated in the bottom row of assessments, the combined PUK/OWL assessment team may decide that further assessments are necessary, either to establish a diagnosis, or to understand the full range of the child’s disabilities and/or mental health problems.
- A Speech & Language Therapist (SaLT) assessment. Language delay or dysfunction can be a part of ASD, but in some cases can be an alternative diagnosis.
- Many children with ASD have sensory sensitivities that are very handicapping, such as: fear of loud noises; dislike of certain textures of clothing; or distaste for certain foods. So it is important to detail these as clearly as possible, both to help determine the diagnosis, and to understand the child’s particular difficulties. A specially trained Paediatric Occupational Therapist can not only do a thorough sensory assessment with this in mind, but can also recommend treatments.
- A ‘Psychometric Assessment’ more-or-less means an IQ test, although there is a bit more to it than this. Such skilled testing requires an Educational Psychologist or a Clinical Psychologist. There are certain characteristics of the result, or the child’s behaviour during testing, that may suggest or refute ASD. It is also important to know whether the child has either a very low or a very high IQ, both of which can mimic ASD. Since this is an expensive test, the team will not recommend it unless there is a compelling need for the information it could provide.
- Some children with possible ASD should see a Consultant Community Paediatrician. This is necessary to look into the possibility of an underlying or coexisting medical condition (Such as a chromosome anomaly, tuberous sclerosis, Foetal Alcohol Spectrum Disorder, or rarer causes of Learning Disability). A few children may need referral onwards to a Paediatric Neurologist. Both of these should be available on the NHS, but waiting times vary.
- Further Psychiatric Assessment should be unnecessary if the initial Psychiatric Assessment, combined with the assessments done by other disciplines, have been sufficiently thorough. But sometimes questions may arise about coexisting (‘comorbid’) mental health problems, such as ADHD, Anxiety or Depression. For these children, further Psychiatric Assessment may be required, potentially followed by psychological or pharmacological treatment.
This should almost always be done by a parent or Guardian, although young people of 16 or 17 can in principle refer themselves – providing someone agrees to pay. Please contact PUK admin on the number given on the website, and a suitable blank referral form will be sent to you to complete. You are likely to be asked to provide some information before the appointment, such as:
- Reports of past assessments of relevance (from CAMHS, Paediatrics, Educational Psychology, or by other professionals)
- Questionnaires to be filled in and scored before your initial assessment.
Other sources of information
- National Autistic Society: https://www.autism.org.uk
- Yale University (A world-renowned centre of excellence in Autism) information on ASD: https://www.yalemedicine.org/conditions/diagnosing-autism/
Potentially helpful references