Post-Autism Diagnosis Support for Adults in the United Kingdom: Positive and Negative Experiences and Proposed Solutions to Address Gaps in Service Provision

Abstract

Background:

Research highlights that access to support services after a diagnosis of autism in adulthood is limited, but few studies have investigated possible solutions to this problem. We explored the experiences of survey respondents receiving or providing an autism diagnosis in adulthood, identified support, and examined characteristics of valued or desired support, in the context of limited-service provision.

Methods:

We surveyed autistic adults, relatives, and clinicians about experiences of UK adult post-autism diagnosis support and services within 12 months following diagnostic assessment. We used thematic analysis with a hybrid deductive/inductive approach; we defined broad a priori themes and triangulated respondents’ perspectives and views.

Results:

In total, 343 autistic adults, 45 relatives, and 35 clinicians completed parallel surveys. We defined four superordinate themes: (1) using networks post-diagnosis to make changes, (2) characteristics of effective and acceptable support solutions, (3) making autism support better informed, and (4) ways of addressing perceived gaps in support services.

Conclusions:

We have described examples of support leading to positive change and constructive recommendations that can guide and inform quality improvement activities by (1) those commissioning and providing adult post-autism diagnosis support and (2) professionals evaluating provision, to enhance evidence-based post-diagnostic support services.

Community Brief

Why is this an important issue?

There are limited supports and services for autistic people after they receive a diagnosis in adulthood. While research has focused on deficits in support and service provision, less research has examined positive experiences and solutions.

What was the purpose of this study?

We wanted to explore the views of autistic adults, relatives, and clinicians involved in providing diagnostic services. In particular, we wanted to know what post-diagnosis support service has worked well and what could work better by asking people about their experiences.

What did the researchers do?

We surveyed 343 autistic adults, 45 relatives, and 35 clinicians about their experience of support for autistic people after diagnosis in adulthood. We looked at what they said to find themes about what happened after an autism diagnosis. We also explored themes about positive experiences of support and possible solutions alongside descriptions of gaps in service provision and suggestions and recommendations for improvements to available support.

What were the results of the study?

We found the views of the autistic adults, relatives and clinicians could be grouped into four key areas or themes. The first theme described how community networks could be used to make changes after diagnosis. The second theme described support solutions. Examples included individualized support, psychoeducation, and support for autistic carers, families and relatives. Thirdly, we found a focus on autism experts, training and integrating support within specialist and mainstream settings. Lastly, we identified a theme which described ways of improving access to community resources and opportunities.

What do these findings add to what was already known?

We identified recommendations for ways of improving support and services based on what autistic people, families and clinicians told us. One example was finding ways of sharing information from diagnostic reports about strengths, difficulties and reasonable adjustments with healthcare staff or employers. The examples of support we identified that led to positive change can be used by healthcare and other providers to enhance post-diagnostic support provision.

What are potential weaknesses in the study?

The respondents we surveyed had recently received an autism diagnosis (during the 5 years before the study started) and described their experience of support in the year after diagnosis. Attitudes of autistic adults and relatives to receiving an autism diagnosis and accessing support and services may change over time with transitions and life experiences. The views of participants we surveyed may therefore not represent the experiences of autistic adults and relatives at other life-course stages.

How will these findings help autistic adults now or in the future?

A greater understanding of direct experiences of service users, relatives and clinicians, including learning about the positive experiences and recommendations we identified can be used to help shape support and services for autistic adults now and in the future.