Autism Diagnosis in Adults with Learning Disabilities V1
Research type
Research Study
Full title
Exploring the Value of Autism Diagnosis in Adults with Learning Disabilities
IRAS ID
342728
Contact name
Harriet Wells
Contact email
Sponsor organisation
University of Essex
Duration of Study in the UK
2 years, 1 months, 29 days
Research summary
This study aims to explore the value of receiving a diagnosis of autism during adulthood for people with learning disabilities. Autism and learning disabilities often co-occur. Research has been carried out exploring the impact of a diagnosis of autism in adulthood, but people with learning disabilities have not been included in this. This study aims to explore the impact that a diagnosis of autism in adulthood has on people with a learning disability. The chief investigator plans to interview adults with a learning disability and autism and/or their family members to achieve this. To recruit, staff within a NHS Adult Community Learning Disability Service will be asked to share research posters with their patients and their family members, that meet criteria. Posters will also be put up in trust sites for service users to view. To be eligible to take part the person with a learning disability must have received their autism diagnosis during adulthood and within the last ten years. People will be excluded if they are acutely mentally or physically unwell, if they are unable to consent to take part, or if there are current active safeguarding investigations taking place. If potential participants make contact or give consent to be contacted after having seen one of the posters, they will be provided with an information sheet. If they agree to take part, interviews will be arranged, and participants will be offered the interview guide ahead of time so they can prepare for the interview if they wish. Written consent will be obtained before proceeding with the interview. Both easy-read and non-easy-read versions of the information sheet and consent form will be used depending on the participants accessibility needs. Interviews will last approximately 60 minutes. If this is too long for participants, they will be offered two shorter meetings to complete the interview.
Lay summary of study results: The transcripts were analysed using Reflexive Thematic Analysis, which is a technique that is used for making sense of large amounts of data where themes are constructed. Five main themes and 13 corresponding subthemes were constructed; a summary of each main theme is given below.
Theme One: Journey to Diagnosis
The theme Journey to Diagnosis relates to participants’ experiences of autism being identified, assessed, and diagnosed. This incorporates autistic adults’ earlier life experiences including the influence of learning disability, the autism assessment itself, and how participants received the diagnosis, from both autistic people and their family members perspectives.
This theme highlights the potential impact that having a learning disability can have. Some participants suspected that autism was not identified until adulthood due to diagnostic overshadowing, in which behaviour is attributed solely to learning disability. A lot of participants felt it would have been better if autism had been diagnosed earlier, however some people felt this was not necessary as support was already in place due to the learning disability. Most participants found the autism assessment itself acceptable however it included challenges for some people, and others felt the presence of a learning disability was not adequately accounted for within the assessment. Many participants experienced relief and happiness on receipt of the diagnosis, however more difficult emotions arose for people that had not expected it. This highlights the impact that previous experiences, understanding, and the meaning that is made from later diagnosis can have.Theme Two: Understanding
The theme Understanding relates to how the autism diagnosis has impacted participants’ understanding of themselves or their family member, influencing their wellbeing and behaviour. It also relates to participants understanding of autism itself.
This theme suggests that receiving a diagnosis of autism can increase people’s understanding of themselves or their relative which has beneficial impact. However, some people shared it can make it difficult to identify whether certain behaviours are driven by autism or not. Many participants shared feeling they had little understanding of autism as a condition, suggesting some people could benefit from being supported to learn more about autism.Theme Three: Wellbeing
The theme Wellbeing relates to how the autism diagnosis has affected the autistic individual’s health, including their view of themselves and how they and others manage experiences to support their needs.
This theme suggests that for some people, receiving an autism diagnosis can create shifts in how they see and therefore feel about themselves. Some people felt it had given them a stronger sense of identity, whereas others viewed themselves in exactly the same way. For many participants being diagnosed with autism enabled greater self-esteem and confidence, meaning they felt more able to be and show themselves. Being diagnosed also helped some people learn new strategies that support their wellbeing.Theme Four: Support System
The theme Support System refers to how the autism diagnosis has influenced the wider system around the autistic individual, impacting their and their family members experiences. This includes support from services, how they are treated by other people including their family, and ways it has impacted their family members personally.
Many participants felt the autism diagnosis had little impact on input from professional services, as the support they receive remained the same. This highlights the importance of services discussing potential consequences and expectations following diagnosis with clients prior to assessment. A lot of family members advised that the autism diagnosis led them to have more patience with their autistic relative, as they learnt certain things they do are not their fault. For others, the support that they offer their relative, or the support they received from their family member, remained the same. This theme also highlighted how autism diagnosis can impact family members in a caring giving role, as some participants that were parents said they had some regrets about how they had parented in the past. It gave a sense of relief to some, as they learnt certain things their relative did was due to autism as opposed to how they had been parented.Theme Five: Language
The theme Language refers to ways that autism as a diagnostic label and word has impacted participants, through their own and others use of it, including some reflections on how participants feel about it.
Some people shared they needed or liked having a label, whereas others felt labels can lead others to stereotype people. Some participants shared the word autism helps them communicate their or their relatives’ needs with others more easily, acting as a quick way to explain behaviour or access accommodations as needed.Conclusion
The Reflexive Thematic Analysis revealed five main themes consisting of 13 subthemes, exploring the impact that receiving a diagnosis of autism can have for adults with a learning disability and their family members. This includes how it can affect autistic people and family members individually and collectively, including in their interactions with wider systems. It also includes participants’ experiences across different timescales, including prior to and during assessment, and post-diagnosis. One of the most influential aspects appears to be how the autism diagnosis has altered people’s understanding, leading to changes in support and wellbeing.REC name
East of Scotland Research Ethics Service REC 2
REC reference
24/ES/0061
Date of REC Opinion
27 Aug 2024
REC opinion
Further Information Favourable Opinion