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The Leeds Autism Diagnostic Service (LADS) is an all IQ service accepting professional and self-referrals, from age 18, for diagnostic assessment. LADS is unusual compared to other diagnostic services in England, in that it accepts self-referrals. The purpose of this paper is to compare diagnostic outcome between self-referrals and other referral sources.

This is a service evaluation of all 692 referrals for diagnostic assessment into LADS, over a three year period, from 2016 to 2018. The diagnostic outcomes were compared between self-referrals and other referral sources. Secondary analysis looked at age and gender differences between these groups.

There were 98 self-referrals over three years with autism diagnosed in 65 per cent. In total, 594 other referrals were received during this time period, with autism diagnosed in 44 per cent. This showed a significant difference of 21 per cent with 95% confidence intervals of 10–31 per cent (p=0.0001) using a n−1 χ² test. In total, 59 per cent of self-referrals were from patients identifying as female, which compared to 35 per cent identifying as female from other referrals. This was a difference of 24 per cent with 95% confidence interval of 14–34 per cent (p<0.0001) on the n−1 χ² test.

Factors which may influence the ability to generalise from these results are: that LADS covers a large mainly urban and suburban area with a range of ethnic and socioeconomic diversity; that LADS is an all IQ service unlike some other autism diagnostic services; historical and service-related factors unique to Leeds may be dissimilar to other locations. It was beyond the scope of this evaluation to perform a qualitative analysis to compare the referral sources, but this may be an area for further study.

This evaluation supports the use of a self-referral route for adult autism diagnostic services on a local level and may support its use more widely in other services.

This evaluation, in demonstrating proportionately significantly higher autism diagnosis from self-referrals is likely to be reducing the work load of professionals who would normally make referrals. Alternatively, it may be capturing a subgroup of the autism population who would not otherwise have sought diagnosis. In either scenario, it supports and is consistent with a patient centred approach to accessing appropriate diagnostic services.

The authors are not aware that any previous evaluation of this nature has been conducted and feel this evaluation supports the use of a self-referral pathway in adult autism diagnostic services.

The diagnosis of autism in adults often involves the use of tools recommended by NICE guidance but which are validated in children. The purpose of the paper is to establish the strength of the association between the Autism Diagnostic Interview-Revised (ADI-R) scores and the final clinical outcome in an all intellectual quotients adult autism diagnostic service and to establish if this in any way relates with gender and intellectual ability.

The sample includes referrals to Leeds Autism Diagnostic Service in 2015 that received a clinical outcome. Sensitivity, specificity and positive and negative predictive values were calculated to evaluate ADI-R and final clinical outcomes. Logistic regression model was used to predict the effect of the scores in all the domains of ADI-R and the two-way interactions with gender and intellectual ability.

ADI-R has a high sensitivity and low specificity and is useful to rule out the presence of autism, but if used alone, it can over diagnose. Restricted stereotyped behaviours are the strongest predictor for autism and suggests that the threshold should be increased to enhance its specificity.

This is a single site study with small effect size, so results may not be replicable. It supports the combined use of ADI-R and Autism Diagnostic Observation Schedule and suggests increasing ADI-R cut-offs to increase the specificity.

The clinical team may consider piloting a modified ADI-R as suggested by the results.

To the authors’ knowledge this is the only study of ADI-R in an adult population of all intellectual abilities.

Leeds autism diagnostic service is an adult autism diagnostic service for people of any intellectual ability which also offers consultancy to service users/carers or professionals, as well as a wide range of autism training. The service was set up as a pilot in 2011 and a paper describing the service development was published in this journal in November 2015. The purpose of this paper is to describe the approach taken to measure the quality of the service the authors provide and accurately assess risk in adults with autism.

The process of evaluating appropriate outcome measures is described, along with considering appropriate risk assessment tools for use in the community. Over 200 people each year complete the autism diagnostic pathway, and 164 patients were invited to respond to service evaluation questionnaires in 2014.

To date, the most useful outcome measures for this group include a prospective service user questionnaire which enables service user opinion to influence service development. In the absence of any appropriate autism-specific risk assessment tools, the service has developed one which it is currently piloting. This has proved particularly useful in the consultancy setting

This paper is a follow-up paper looking at the day-to-day issues that the team have had to grapple with – how do you assess whether what you are doing is providing the best possible service for the people that you serve and how do you accurately assess risk in this population?

Autism is a spectrum condition, yet many autism services limit access based on IQ score. The Department of Health 2009 enabled enthusiastic clinicians in Leeds with a strong interest in autism to apply for funding to develop an all IQ adult autism diagnostic service and here we present the experience. The paper aims to discuss this issue.

The process of establishing and then expanding the service is described. Details of the diagnostic pathway and tools used are provided.

The number of referrals was higher than expected – a baseline of 20 per year rose to 150 per year as soon as the service opened. Other unexpected findings include relatively low diagnosis rates (32 per cent), high rates of past trauma and patient dissatisfaction when a diagnosis of autism is not given.

To date, the service has assessed 517 patients, and plans are underway to collaborate with the local adult ADHD team to form a unified adult neurodevelopmental disorders service.

The Adult Asperger Assessment (AAA) was designed to be a screening tool to identify adults with Asperger syndrome and/or high-functioning autism. The AAA includes three questionnaires; the Autism Quotient (AQ), the Empathy Quotient (EQ) and the Relatives Questionnaire (RQ). The Autism Quotient-10 (AQ-10) was designed to be a “red flag” for healthcare professionals considering referral for ASD assessment. The purpose of this paper is to determine the usefulness of the AAA and AQ-10 as part of an adult autism diagnostic pathway that includes patients of all intellectual ability.

Results were obtained for all patients who had received a clinical decision at Leeds Autism Diagnostic Service, which is a service that assesses patients of all intellectual ability, during 2015, n=214. Of these 132 were included in the analysis, 77 patients were excluded for not completing the AAA and four were excluded for not receiving a clinical decision.

Results suggest that patients diagnosed with ASD without intellectual disabilities score on average 35 on the AQ, 17 on the EQ and 20 on the RQ. Those not diagnosed with ASD score on average 33 on the AQ, 22 on the EQ and 15 on the RQ. Patients with intellectual disabilities, scores are lower on the AQ, and higher on the EQ and RQ than those without intellectual disabilities. These results are the same regardless of diagnosis of ASD. The RQ is the only questionnaire to result in a significant difference between those diagnosed and not diagnosed. Results suggest that the AQ-10 is not useful in this clinical population.

This study was undertaken as part of a service development improvement process. The specific demographics of this clinical population may have influenced the findings. The process will need to be repeated to ensure that the results are consistent across time and increased sample size. The population of patients with an intellectual disability is small, further studies into the use of the AAA or the design of other intellectual disability specific screening tools should be pursued. It is of note that the AAA was never intended for use within an intellectual disability population.

This is an original paper as it will be the first to consider the usefulness of each of the aspects of the AAA collectively. It will be the first to assess: the AQ-10 alongside the AAA, the usefulness of the AAA regardless of intellectual ability and the usefulness of the AAA within a clinical population by using the diagnostic outcome as the benchmark of the usefulness of the AAA scores. This paper will only be discussing the scores generated by the AAA, and the correlation of these scores with a diagnosis.