How to ensure your Autism Assessment is both valid and reliable?

Dr Emilie Moorhead

Introduction

As an experienced Clinical Psychologist with over 17 years’ experience assessing people for Autism, I have worked in seven different Autism assessment clinics within both NHS and private practice. Whilst there are clear diagnostic criteria to follow in order to determine whether or not a person can be given a diagnosis, I’m always struck by the subjective nature of services and how the final diagnostic decision is made.

“At present there is no one regulatory body which oversees the ways that Autism assessments occur.” 

Consequently, a family can be told that there is no Autism diagnosis in one service, only to be given a diagnosis at the next service. This can leave people feeling that the assessment process is unreliable and they may question the legitimacy of the diagnosis that they are given. With lengthy NHS waits of several years, sometimes opting for a private assessment is the only option forward. However, what should you look for in an Autism service to ensure that you are getting an valid and reliable assessment?

National Institute of Clinical Excellence (NICE) guidelines

For a child assessment I would always consider the following:

Ensure that the service is following National Institute of Clinical Excellence (NICE) guidelines. These are not mandatory but highlight key components that should be adhered to in- order- to achieve a ‘Gold Standard’ Autism assessment.

Features of an assessment

At a minimum an assessment should include:

·       Screening and triage information

·       Clinical interview (including, but not limited to developmental history)

·       Behavioural observation (possibly the ADOS-2 but it does not have to be)

·       Consideration of possible differential and co-occurring diagnoses

·       Information from home, school and the young person

Triage/screening process

There needs to be a robust triage/screening process in order toto determine whether the assessment should be considered a ‘standard’ or ‘enhanced’ assessment. The latter typically occurs when the usual assessment process can not cannot be followed, such as where parents may be available to complete the developmental history, or where the individual is not able to complete a behavioural observation. Additional factors and co-morbidities may also be highlighted which need further consideration.

Multi-disciplinary team

Typically, Autism assessors may come from the following backgrounds, but there can be other competent professionals provided they have suitable training and experience:

·       Speech and Language Therapist

·       Occupational Therapist

·       Clinical Psychologist

·       Psychiatrists

·       Paediatricians

·       Social Worker

·       Mental Health Professional

It is important to ensure that the assessment is carried out by a multi-disciplinary team (at least two professionals from different health profession backgrounds) and not completed by a sole clinician working on their own. Whilst standard autism assessments can be carried out by two professionals with suitable knowledge and experience of Autism assessments, where there are complexities an enhanced clinical assessment with a mental health professional is required. Concern should be raised if there are not the  proper procedures in place to facilitate an enhanced assessment if required.

The importance of context

Scores from behavioural observations, such as the ADOS-2, should not be seen as a stand-alone score and must be interpreted within the contextual information gathered during the clinical interview. Therefore, some assessments may result in a diagnosis even if the clinical threshold for Autism was not reached on the ADOS. Likewise, reaching this threshold does not guarantee a subsequent diagnosis.

Where assessors do not come from a mental health background, there needs to be appropriate clinical oversight from a clinician that does, with access to regular supervision sessions to help facilitate this. It is fine to ask what experience and qualifications assessors have in carrying out Autism assessments.

Clinical assessments will vary according to age and developmental stages but should be carried out by a clinician with a medical background. This may include Clinical Psychologists,

Paediatricians and Psychiatrists. This assessment is crucial in gathering context around the assessment to help generate a formulation as to causes of the presenting traits and to determine whether or not a person may have a differential or co-occurring diagnosis. Specifically, it may consider factors such as: attachment; ADHD, intellectual disability and mental health conditions.

It may be that additional assessments are needed to determine whether or not an Autism diagnosis is present.

These can include:

·       Cognitive assessments

·       Speech and Language Assessments

·       Sensory Assessments

·       Further exploration of Attachment difficulties/mental health

·       School observations

·       Physical health examinations

In order to receive a valid and reliable assessment, it is vital that the assessment service is able to offer these additional elements as required. That’s not to say that everyone will need to have all these assessments, far from it, but it is important to know that where relevant the impact of other life events and co-morbid mental health conditions have been given due consideration. Services should come into question where this is not the case, and there is no option to consider for instance the impact of adverse childhood experiences. This element should only be carried out by a clinician who has specific mental health training to do so.

Appropriate adaptations for online assessments

Online assessments can be advantageous in certain situations and they are able to pick up on many Autism presentations effectively. However, please note that more subtle features, such as certain stimming behaviours, can sometimes be missed where a behavioural observation is limited to a camera’s eye perspective only. It is also important to note that certain tests such as the ADOS-2 have not yet been validated for online use, so scoring in this context may not be as accurate. Instead, appropriate adaptations and adjustments are required for online observations to ensure that they are completed in a valid manner. Where online assessments result in an inconclusive outcome, is there an option to complete a face to face assessment or school observation instead?

Summary questions

Key questions to ask which can help to establish the credibility of Autism assessment services:

·       How much experience have they got assessing for Autism?

·       Do they follow NICE guidelines?

·       Who is included in the multi-disciplinary team?

·       What process do they follow to ensure that co-occurring mental health conditions are ruled out?

·  Do they have professionals with a specific (mental) health background involved in the team such as: Psychiatry; Paediatrician or Clinical Psychologist?

·       What adaptations are made if the behavioural assessment is completed online, to ensure that more subtle Autistic features are identified?

- Can a face-to-face assessment be completed if necessary?

Conclusions

Hopefully these tips will help you to feel more assured in the Autism assessment process and have confidence that the outcome reached is the right one. However, if you are unsure, do speak to the assessment service themselves for further advice.