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Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. However, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advocacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence.

Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars.

Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and non-autistic parent advocates and offer three principles for building future alliances to bridge the divide between autistic adults and non-autistic parents.

Implications: The chapter ends with optimism that US national priorities can bridge previous gulfs, creating space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people and their families and communities.

The differential impact of young adult diagnosis on families during the period of transition from school to adult life was examined. Participants were parents of 246 young adults with severe learning disability aged 18‐26. Young adults were classified into four diagnostic groups: autism (N = 30), Down's syndrome (N = 68), cerebral palsy (N = 95) and an undifferentiated learning disability group (N = 53). Research questions pertained to parent expectations about their young adults' transition to living and working environments post high school. Parental satisfaction and worries were also assessed. The results indicated more community expectations of work for young adults with Down's syndrome, and more restrictive expectations for young adults with autism, including more expectations that young adults with autism would move out of the family home into a residential environment. Parents of young adults with autism also worried significantly more about various aspects of transition than other parent groups.

Autistic young people have health and care needs that may benefit from a multi-agency intervention. The “Current View” tool is routinely used in England to profile the needs of young people referred to mental health services. This study aims to examine associations between comorbidities and complex needs in autistic and non-autistic young people to assess the multifaceted needs of autistic young people.

A cohort study was conducted using data from the electronic patient record, comparing autistic and non-autistic young people to see which items in the four “Current View” tool categories were associated with autistic young people.

Issues associated with autistic young people were: “community issues”, “attainment issues” and “deemed child in need” (all p < 0.001). Autistic young people scored significantly more items (p < 0.05) in the categories complexity/contextual/educational factors. Comorbidities associated with autistic young people included anxiety, “behavioural difficulties”, “peer relationship difficulties” and “self-care issues” (all p < 0.001). There was an association with increased comorbidities and complexity factors in autistic young people which suggests increased support from agencies may be beneficial.

Few studies have used data in the “Current View” tool to assess young people referred to services. More use could be made of this data for planning and delivering services.

This chapter focusses on the lack of research about fathers raising autistic children. It begins by presenting the results in the Braunstein, Peniston, Perelman, and Cassano (2013) study, which showed that there is not much research about fathers raising autistic children compared to mothers raising autistic children. Some of the key issues in research about these fathers, such as paternal experiences of raising an autistic child, are then presented. Several areas where more research can be conducted in the future are then outlined. These suggestions are based on the limitations in the examined studies and consequently what types of research could be conducted to address these limitations. Addressing such gaps can only occur if there are strategies that can be used to recruit fathers into autism research. To this end, some of the main recommendations in Davison et al.'s study about how to recruit fathers into studies are presented.

The original contribution that this chapter makes to the field of autism spectrum research is to explain areas where there is a lack of research about fathers raising autistic children as well as potential strategies that can be used to stimulate their interest in participating in such research.

The purpose of this study is to investigate the information-seeking behavior of Egyptian parents of autistic children.

The study sample consists of 61 parents across Egypt, divided into six focus groups, as equal as possible, to represent Northern, Middle and Southern Egypt.

Dmographically, of the 61 parents, 32 (52.5%) were fathers, and 29 (47.5%) were mothers. A large number of parents' ages ranged from 31 to 45 years old. The highest percentage of them was holding a BA, followed by a high school/diploma, and the highest percentage was found to be married. The parents of autistic children followed many methods and channels to obtain supportive information related to their children's disease. They used many types of information, which varied between formal and informal sources. While just over a quarter of Egyptian parents prefer to use formal sources (books, newspapers, magazines, health publications, pamphlets, as well as specialized libraries), more than three-quarters of them used informal sources, such as mobile/smartphones, the Web, social media and social networking sites. The information related to the search for institutions supporting autistic people came in the first place, then that information related to searching for specialized centers in treating autistic children, then information related to rehabilitation, integration and psychological support centers for these children and then information related to the search for financial aid provided by charitable or even government agencies. Some parents were found to have limited awareness of their children's treatment mechanism, as some of them do not consider the need to treat their children in a systematic, continuous, and systematic manner. Similarly, the lack of basic services and shortage of government centers specializing in the treatment of these children. Parents also emphasized the lack of government support, as well as the lack of curative research centers. Some also pointed out that there was a shortage of workshops for the rehabilitation of their children and themselves as well.

This research is considered to be the first research of its kind at the local and Arab levels, which is also one of the few studies at the regional level that is interested in this community of information seekers. The findings of this research can raise awareness about the information behavior of Egyptian parents of autistic children among those who are interested in the role of the information and its use by specific groups of the information society, as well as decision makers.

The peer review history for this article is available at: https://publons.com/publon/10.1108/OIR-11-2020-0494

Parents whose children have undergone an autism assessment often describe the process as extremely stressful. This affects how parents engage with services post-diagnosis, meaning less likelihood of using subsequent service support despite struggling to cope. Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al. 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families’ needs can be better met during the assessment process.

In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years. Thematic analysis determined key themes.

The six themes were: clarity and communication, access to support and resources, aftercare, recognition of parent concerns, personalisation of the assessment process and concerns around the use of personal protective equipment/online assessments. These themes led to criteria to assess the quality of autism assessment services in line with parent perspectives.

These parent-informed criteria could facilitate the consideration of parents’ views into service evaluations of autism assessment services across the UK.

Previous research indicates that the autism assessment experience is often extremely stressful and overwhelming for families (Crane et al., 2016). Despite this, guidance to improve autism services rarely prioritises the opinions and experiences of service-users and their families. The criteria presented here were derived from themes identified by interviewing parents on their experiences of the autism assessment process, thus shifting the focus onto service-users.

This chapter outlines several approaches that researchers can use to help them conduct research that respects and includes autistic participants. It begins by highlighting some of the factors that should be considered before, during and after a study is conducted. It then explains some of the benefits and drawbacks of harvesting data from social media. It then concludes with a set of recommendations about inclusive research practices that can help autistic participants be equals in the research process.

The original contribution that this chapter gives to the field of autism spectrum research is to provide researchers with a clear and comprehensive outline of how to conduct research that is inclusive and respectful of autistic participants.