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Advocacy, Self Advocacy and Autism Ranking: Unable to rate

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Advocacy is taking action to help people say what they want, secure their rights, represent their interests and obtain services they need.

Advocates work in partnership with the people they support and they take their side. Self-advocates speak for themselves or for someone else in the same situation, for example, other people on the autism spectrum.

Some advocates specialise in helping specific groups of people, such as people with mental health needs or people on the autism spectrum. Some advocates specialise in helping people with specific issues such as education or disability benefits. 

Some advocates work for independent organisations as paid members of staff or as unpaid volunteers. They may provide advocacy as a separate, standalone service or they may provide advocacy as part of a wider package of support. They may also train their clients so that they learn how to advocate for themselves.

Our Opinion

There is currently very limited research evidence on advocacy and self-advocacy for people on the autism spectrum or their parents and carers.  The studies we identified varied enormously in terms of the type of advocacy provided, the type of study used and the evidence that each study presented.  For example:

  • Some research papers described advocacy or self-advocacy movements but did not provide any kind of scientific evaluation of the advocacy provided by those movements.
  • Some research papers described the benefits of, and the difficulties in obtaining, advocacy and self-advocacy but did not provide any kind of scientific evaluation of the advocacy provided.
  • Some research papers examined the effectiveness of advocacy training but did not provide any kind of scientific evaluation of any advocacy undertaken by the participants following that training.
  • A meta-analysis of parents’ experiences of advocacy did not provide any kind of scientific evaluation of the advocacy provided to or by the parents.

There are a number of reports (Scottish Executive, 2006; National Institute for Mental Health in England, 2008) which provide best-practice guidelines on advocacy for people with complex needs. We believe that anyone providing advocacy for people on the autism spectrum, or their parents or carers, should follow those guidelines. 

We also believe that further research should:

  • Provide a scientific evaluation of specific advocacy programmes, to determine if they achieve the specific objectives of the programme (such as increased funding or better services) and if there are any additional benefits for the participants (such as increased self-confidence or knowledge of autism).
  • Investigate successful advocacy programmes to determine the key elements that make those programmes successful for whom and under what circumstances.
  • Provide a scientific evaluation of advocacy training programmes, to determine the key elements that make the training successful and appropriate to the needs of the people being trained.
  • Involve autistic people at all stages in the development, running and evaluation of those studies.

Disclaimer

Please read our Disclaimer on Autism Interventions


Aims and Claims

Aims

According to “Supporting adults with autism: A good practice guide for NHS and local authorities (2003, individuals on the autism spectrum may need advocacy to help them with a wide range of issues. Those issues may include: access to education; transition to adulthood and adult services; access to housing; access to employment; assistance with social integration and life planning; access to health services and access to/maintaining current benefits.

According to Waltz et al (2015), self-advocacy may have several aims. “Most self-advocacy research places self-understanding, knowledge and voice as essential components. Self-understanding may include identity formation as well as developing an understanding of personal medical, educational or social challenges. Knowledge required may include legal rights, communication techniques, and information about particular systems one needs to engage with. Finally, a self-advocate must have the means to communicate their ideas, choices and wishes. In each of these areas, people may act independently or with support.”

Claims 

There have been a number of research studies that have made claims about the benefits of advocacy or self-advocacy for people on the autism spectrum, or their parents or carers. For example

  • According to Boshoff et al (2016), “Parents referred to advocacy as a strategy for coping with fear, frustration, depression and anger, before hope can return again”. 
  • According to Burke et al (2016), the “…participants demonstrated significantly increased empowerment and special education knowledge, and stronger family-school partnerships”.

There have also been a number of best practice reports which have made claims about the benefits of advocacy. For example:

  • According to “Supporting adults with autism: A good practice guide for NHS and local authorities” (2003), Independent advocacy services are a perfect example of cost-effective, low-level support that facilitates independent living. Those adults with experience of independent advocacy testified to its value, but more advocacy organisations need to be equipped with the skills to work effectively with this group”.

Audience

Advocacy is designed to help anyone who needs it, especially people who are marginalised or excluded within society or who have complex needs. This includes some people on the autism spectrum and sometimes their parents or carers.

According to “Supporting adults with autism”: A good practice guide for NHS and local authorities” (2003), most autistic people are likely to need advocacy of some kind.

“All people with ASD have impairments in social interaction, social communication and imagination. They therefore need help to express their aspirations, interpret and process information regarding their rights and to request relevant services.

“People with Asperger syndrome, because of their fluent language, and average or above average IQ level, may not appear to need access to advocacy services. This can be misleading and it is important that advocacy services are available for all people with ASD.”

Key Features

Introduction

According to the Action for Advocacy website, accessed on 25 May 2017, 

“Advocacy is taking action to help people say what they want, secure their rights, represent their interests and obtain services they need.”

According to the National Autistic Society website, accessed on 25 May 2017, 

“Advocacy is a process of supporting and enabling people to express their views, to use information and services, to find out about options and make decisions, and to make sure their rights are respected.”

Types of advocacy

Advocates work in partnership with the people they support and take their side. Self-advocates speak for themselves or for someone else in the same situation, for example, other people on the autism spectrum. Group advocates work together to support the other members of the group.

Advocates can include people on the autism spectrum, parents and carers, staff of voluntary organisations or paid specialists.

Some advocates specialise in helping specific groups of people, such as people with mental health needs or people on the autism spectrum. Some advocates specialise in helping people with specific issues such as education or disability benefits. 

Some advocates work for independent organisations where they may be paid members of staff or they may be unpaid volunteers. In some cases, the local authority will pay for an independent advocate.

Some advocates may provide advocacy as a separate, standalone service or they may provide advocacy as part of a wider package of support. They may also train their clients so that they learn how to advocate for themselves.

The National Autistic Society website, accessed on 31 May 2017, provides more details about the different types of advocacy.

Online advocacy

According to Waltz et al (2015), the internet is especially important for self-advocates.

“For at least some self-advocates with autism, the Internet is their only or primary avenue for self-advocacy. Specific forms of online self-advocacy have emerged, such as individual communications with the world via blogs, vlogs and self-produced films, and using the Internet to orchestrate collective advocacy via (electronic) letter-writing or adverse publicity campaigns, a tactic adopted by the US-based Autistic Self Advocacy Network to combat misrepresentation of autistic people in the media or by service providers”.

Cost and Time

Cost

Generally, advocacy is provided free of charge by the advocate so there is no charge to the person on the autism spectrum or their family members.

Some advocates and advocacy organisations are funded or part-funded by government agencies or by not for profit organisations such as the voluntary or community sector.

For self-advocates, the costs can be considerable and include time off work, travel etc.

Time

The amount of time it takes to provide advocacy will depend on a number of factors including the needs of the individual client, the nature of the problem (whether it is a short term or long term issue) and whether the person providing the advocacy faces any constraints (such as a limited number of hours per week).

Boshoff et al (2016) noted that advocacy can almost become a full time occupation for some parents,

“Parents described the personal impacts of advocacy in terms of the dedication, commitment and perseverance required in order to do everything they could for the well-being of their child. Parents described that advocacy required time, effort and energy. Lalvani (2012) reported that parents of higher socioeconomic status expended ‘inordinate amounts of time, effort and resources in order to effectively negotiate the special education system’. This was supported by McCabe (2007) who stated that ‘Advocacy and involvement was a fulltime activity for many parents and exhausting’. Parents shared many stories of the great lengths that they went to in order to obtain the help for their child in a timely fashion”.

Risks and Safety

Hazards

There are no hazards in providing advocacy to people on the autism spectrum but there are some significant difficulties and barriers. For example,

According to Saeki and Powell (2008) many people on the autism spectrum "have communication difficulties, and may - unintentionally - misrepresent their support needs".

People on the autism spectrum may also find social interaction difficult, particularly with people that they do not know. This may make advocacy particularly stressful for individuals on the spectrum.

According to Boshoff et al (2016), parents reported “... barriers to advocating for their children (such as being from a lower socioeconomic background, as well as from a different cultural background as the service provider, and being less articulate)”. 

According to Waltz et al (2015), it is important to understand that there are tensions between the advocacy provided by some organisations and the wishes of some autistic self-advocates. They note, for example, that some organisations may use advocacy as a way of achieving their own objectives, as opposed to meeting the needs of the people they are supposed to be advocating for.

“The form and language of autism self-advocacy may also be adopted by service providers and  governments, at the same time as these constrain what can be said, who can say it and, most importantly, whether and when self-advocates can exert power. Self-advocacy can also be co-opted as a way to further institutional objectives”.

Contraindications

There are no known contraindications (something which makes a particular treatment or procedure potentially inadvisable) for advocacy and self-advocacy. 

Suppliers and Availability

Suppliers 

In the UK there are dozens numerous organisations which provide various forms of advocacy using both paid staff and volunteers. Some advocates specialise in helping specific groups of people, such as people with mental health needs or people on the autism spectrum.

In some cases, people on the autism spectrum may be entitled to use the services of an independent advocate who is paid for by the local authority if “they are likely to have substantial difficulty in engaging with the care and support process”. 

However, according to “Supporting adults with autism: A good practice guide for NHS and local authorities” (2003), 

“People with autistic spectrum disorders (ASD) are not receiving the advocacy support that they need. This is due to a lack of funding by local and central government and the unmet training requirements of advocacy organisations. As a consequence, advocacy organisations are unable to provide adequately for this group”.

Credentials

Different countries have different regulations concerning qualifications for advocates.  For example, NIMHE (2008) states that all independent mental health advocates will have to successfully complete the IMHA module of the National Advocacy Qualification within one year of being employed. 

The Scottish Executive report on advocacy (2006) notes that, in addition to any qualifications,

“… an advocate needs: knowledge, tenacity, skills, resilience and a lot of common sense.”

One of the most important qualifications for advocates or self-advocates is that they should offer support that is clearly independent from service providers, carers or public authorities and that they understand the needs of their clients.

However, according to “Supporting adults with autism: A good practice guide for NHS and local authorities” (2003), many advocates have not been properly trained in how to deal with people on the autism spectrum.

“Advocacy organisations have an obvious need for training in awareness and understanding of autism. Over half the organisations had not previously been in contact with the NAS despite the fact that many advocated for people with an ASD. More than three quarters had not been in contact with a local autistic society. The majority of independent advocacy services are therefore operating in isolation with regards to autism.”

History

In America in the 1960s a group of parents who had children with learning difficulties shared a common concern regarding who would represent and protect their children's rights when they were no longer able to. The solution was to develop a group of people living in the community, not involved in care services for reasons of independence, who were willing to give up their time to work in partnership with people with learning difficulties in order to ensure that their wishes were understood and listened to. The first citizen advocacy group in England was developed in London in 1981 (Person to Person Citizen Advocacy).

Current Research

There is a considerable body of scientific research on the benefits of advocacy and self-advocacy in general but relatively little scientific research into the benefits of advocacy and self-advocacy for people on the autism spectrum.

We identified fewer than twenty studies on advocacy and self-advocacy that were specific to autism and that were published in English-language, peer-reviewed journals.

The studies we did identify varied enormously in terms of the type of advocacy provided, the type of study used and the evidence that each study presented.  For example:

  • Some of the studies (such as Bagatell, 2010; Bovee, 2000; Itkonen and Ream, 2013; Rosqvist et al, 2015; Ryan and Cole, 2009; Waltz et al, 2015) described the need for, and the development of, the advocacy and self-advocacy movements in different countries.
  • Some of the studies (Brownlow and O'Dell, 2006; McCabe, 2007; Rosqvist, 2014; Townson et al, 2007) described the benefits of, and/or the difficulties in obtaining, advocacy or self-advocacy for some people in different countries.
  • Some of the studies (such as Burke et al, 2016; Taylor et al, 2017) examined the effectiveness of advocacy training programmes for parents of children and adults on the autism spectrum. 
  • One of the studies (Jamison et al, 2017) examined the effectiveness of an advocacy programme for parents which was delivered by other parents who had been trained how to be advocates.
  • One of the studies (Boshoff et al, 2012) provided a meta-synthesis of parents’ experiences of advocating for their autistic children.                                                

Please note: we have not included studies which looked at multi-component interventions, such as student mentoring projects or parent training programmes, which included advocacy training as one element of the intervention. 

Status Research

There are a number of limitations to most of the research studies published to date. For example:

  • The research papers which provided descriptions of advocacy or self-advocacy movements did not provide any kind of scientific evaluation of the advocacy provided by those movements.
  • The research papers which used case studies showing the benefits of, and the difficulties in obtaining, advocacy and self-advocacy did not provide any kind of scientific evaluation of the advocacy provided
  • The research papers which examined the effectiveness of advocacy training did not provide any kind of scientific evaluation of any advocacy undertaken by the participants following that training.
  • The meta-analysis of parents’ experiences of advocating for their children did not provide any kind of scientific evaluation of the advocacy they provided.

For a comprehensive list of potential flaws in research studies, please see ‘Why some autism research studies are flawed’.

Future Research

Summary of Existing Research

There is a considerable amount of high quality, peer-reviewed research on the benefits of advocacy and self-advocacy in general.

There is currently insufficient high quality, peer-reviewed research evidence to determine whether advocacy or self-advocacy are beneficial for individuals on the autism spectrum (or their parents and carers).

However there are a number of reports Scottish Executive, 2006; National Institute for Mental Health in England, 2008) which provide best-practice guidelines on advocacy for people with complex needs, which includes people on the autism spectrum. 

We believe that anyone providing advocacy for people on the autism spectrum should follow those guidelines. 

Recommendations for Future Research

Future research should:

  • Provide a scientific evaluation of specific advocacy programmes, to determine if they achieve the specific objectives of the programme (such as increased funding or better services) and if there are any additional benefits for the participants (such as increased self-confidence or knowledge of autism).
  • Investigate successful advocacy programmes to determine the key elements that make those programmes successful for whom and under what circumstances.
  • Provide a scientific evaluation of advocacy training programmes, to determine the key elements that make the training successful and appropriate to the needs of the people being trained.
  • Involve autistic people at all stages in the development, running and evaluation of those studies.

Studies and Trials

This section provides details of studies of advocacy or self-advocacy for people on the autism spectrum, or their parents or carers, which have been published in English-language, peer-reviewed journals.  Please note: Most of them are not studies into the effectiveness of advocacy or self-advocacy.

You may be able to find more studies on these topics in our publications database. If you know of any other studies we should include in our publications database please email info@researchautism.net with the details. 

Please note that Research Autism is unable to supply publications unless we are listed as the publisher. However, if you are a UK resident you may be able to obtain them from your local public library, your college library or direct from the publisher.

Personal Accounts

We have yet to identify any personal accounts of the use of advocacy for people on the autism spectrum.

Updated
31 Oct 2017
Last Review
01 Aug 2017
Next Review
01 Aug 2020