Autism Innovation Strategy

The creation of an Autism Empowerment Strategy lies at the heart of AsIAm’s mission as Ireland’s national autism charity.

Whilst some Bills have been introduced in the Oireachtas to specifically look at autism, none have ever been passed into law. Equally, there is no mention of autism anywhere on the Statute Book.  Autism strategies are well-established across several European states. 

Governments in countries such as Denmark, Hungary, Spain, the UK and, most recently, Malta have integrated autism inclusion into their respective legislative agendas. Learn more about the strategy below.

A national strategy to empower autistic people and their families nationwide remains AsIAm’s largest policy goal and the government’s proposed Autism Innovation Strategy represents the next step towards that goal. AsIAm and other advocacy groups are consulting with a newly formed Joint Oireachtas Committee to ensure the strategy is developed with community voices in mind.

You can read our submission to the committee in full below or download it here.

In April AsIAm welcomed the announcement of an Autism Innovation Strategy from the Minister of State Department of Children, Disability, Equality, and Integration with Responsibility for Disability Anne Rabbitte TD. It is projected to be a cross-departmental plan with a working group chaired by the Minister  with direct consultation and involvement of autistic people and their families in Ireland.

Many community members may be curious as to what an Autism Innovation Strategy is. As autistic people and their families experience ongoing barriers in accessing essential services such as diagnosis, school places, early interventions and primary service- this announcement can seem unrelated to their current needs. The appointment of a new working group may seem like another layer of bureaucracy to an already complicated process. We hope to demonstrate through this new action plan how an Autism Innovation Strategy can deliver a more accepting, inclusive and empowering Ireland for our community- in our workplaces, schools and wider society.

What could an Autism Innovation Strategy do for me?

Across the country hundreds of children are on waiting lists for diagnosis and access to early intervention services. Parents of an autistic child experience many obstacles in accessing an appropriate school place for their child. Beyond this, unemployment, mental health difficulties and premature mortality rates are much more prevalent in autistic adults. There are many reasons for this.

First, the current framework for autism leans towards the Medical Model, wherein autism is framed as a set of deficits or impairments to be ‘fixed.’ This approach not only increases stigma surrounding autism, but it also sets unrealistic goals in assuming supports are only necessary until perceived ‘deficits’ are gone. Secondly, the specialized nature of autism service means that only specific professionals such as educational psychologists, OTs, SLTs, teachers and SNAs are trained to recognize and support autistic people. Furthermore, long waiting lists means families and autistic adults often go private for diagnosis and supports. Therefore, not only does autism become constrained within the areas of health and education, but it is also further boxed off within sub-professions, some of which are costly and non-state affiliated.

This separation of services leads to relevant information, such as diagnostic reports, Assessment of Needs (AON) and records of support already received being separated into ‘silos.’ It means someone involved in an autistic person’s education may have different records and information to someone involved in their healthcare. It also means that other groups such as employers and public service providers who are not considered ‘relevant professionals’ have no framework to follow in supporting autistic people. For instance a GP may not be in a position to refer an autistic patient for diagnosis if they don’t have updated information of autistic traits (as often happens with autistic girls) or a record of previous treatment. What’s more, past misuse of autistic people’s personal data means a lack of trust in state bodies to retain information responsibly.

What Would a Strategy Include?

An Autism Strategy, in its purest terms, is a plan to achieve meaningful inclusion and empowerment of autistic people and participation in society, throughout their entire life. In an ideal world, Early Years professionals and GPs would have sufficient training to identify autistic traits in young children and promptly refer them for diagnosis. All necessary supports ought to be delivered as quickly as possible and a school place should be provided. We must also look further on in life; autistic children become autistic adults and their needs will evolve accordingly. An autistic adult, for example, may require less speech and language therapy after a certain point, but they will still be autistic. They may choose further study or training and should be supported in this. During their study, if they are undiagnosed, they should be supported in accessing diagnostic services and relevant supports. After this, they should be supported in finding employment, with an employer conscious of their needs and to provide necessary workplace supports or reasonable accommodations. 

These milestones are currently seen as isolated experiences with separate approaches, with only diagnostic supports and education needing to be aligned. In reality, these life stages (i.e. early years to school, school to further training/education, training/education to employment) are worsened by a lack of autism awareness and consistent approach from service providers. Rather than viewing these stages as isolated experiences, a National Autism Innovation Strategy should view them as part of a continuous process which requires consistent and tailored approaches informed by up-to-date autism understanding and acceptance.

This should be informed by a cross-departmental approach which takes autistic experiences into account. For example, addressing mental health needs requires health services but it also requires improved educational opportunities, addressing the link between autism and poverty and ensuring autistic people have meaningful work opportunities.

Finally, this strategy must be developed in consultation with autistic people of all ages and backgrounds. Making the community an active partner in this process is necessary. Without trust and cooperation, the strategy risks repeating past mistakes. It should aim to liberate autism from the restrictive definitions and approaches of the medical model in favour of the lived experience of autistic people present on all levels of society.

Malta has been a good case study for nationwide approaches to supporting autistic people

Implementing an Autism Innovation Strategy

We believe any national strategy ought to focus on the following areas:

.

Health

Children

Adults

Education

Finance

Equality

Employment

Immediate cessation of the new ‘Standard Operating Procedures’, which have reduced children’s assessments to a meaningless box-ticking exercise, and replace it with a system for professional, multidisciplinary, in-depth assessments of need that will both provide a detailed description of a child’s needs and set out proposals for tailored, specific and evidence-based intervention.

Urgent action to address waiting lists for Assessments of Needs, occupational therapy, speech and language, audiology and other areas of need, with the immediate recruitment of additional therapists to ensure early intervention.

A best practice model of service delivery, assessment, diagnosis, and intervention for autistic people, drawing on international expertise, with guidance for health service providers on how to meet the needs of both autistic children and adults, their families, and carers.

Appropriate regulation of autism services and therapies along with recommendations on appropriate action to be taken in relation to therapies which are not medically, or evidence based, make false claims or are dangerous to the welfare of autistic people.

AsIAm’s work so far

Drafting and passing an Autism Empowerment Strategy enshrined into law is a core objective of AsIAm. Whilst many laws have sought to improve autistic people’s lives in recent years, there is no statutory instrument which specifically focuses on autism yet. Check our timeline below

2017

The first positive steps in this direction occurred with the passage of an Autism Bill in the Seanad proposed by Dr. James Reilly (it would later lapse in 2020 with the dissolution of 32nd Dáil.)

AsIAm welcomed this announcement, noting Ireland has neither a strategy for dealing with autism nor sufficient data relating to the condition across the country.

2018

2019/20

AsIAm eagerly awaits further engagement from Minister Rabbitte and Minister Madigan on the development of this Autism Innovation Strategy. We would urge any proposed legislation take a cross-departmental and all-party approach informed by consultation and cooperation with Ireland’s autistic community.

The creation of an Autism Empowerment Strategy lies at the heart of AsIAm’s mission as Ireland’s national autism charity.

Whilst some Bills have been introduced in the Oireachtas to specifically look at autism, none have ever been passed into law. Equally, there is no mention of autism anywhere on the Statute Book. 

Autism strategies are well-established across several European states. Governments in countries such as Denmark, Hungary, Spain, the UK and, most recently, Malta have integrated autism inclusion into their respective legislative agendas.

Ideally, an Autism Empowerment Strategy would take look beyond clinical supports and towards the tangible rights-based issues facing the community such as unemployment and inaccessible services. 

Any robust Strategy would include adjusted and enhanced access to appropriate support services, nationwide training for parents and other persons who work with autistic people and crucially, empowering autistic individuals through providing full participation in society through health, education and self-determination.

For more information, download and read our factsheet below.

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