Winter 2017 Issue – Editorial – Autism and Rights

“People on the autism spectrum don’t think the same way as you do. In my life, people who made a difference were those who didn’t see labels, who believed in building on what was there. These were people who didn’t try to drag me into their world, but came into mine instead” - Temple Grandin

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In Ireland, outcomes for many people on the autism spectrum are poor.  Autistic spectrum conditions do not receive the same recognition here that they do in other countries. Awareness by society of autism is still quite low, particularly about the needs of adults on the spectrum. This makes genuine ‘inclusion’ in Irish society hard to achieve, as adjustments from others are often required to enable people with autism to become full participates in all aspects of society.

At the time of writing this editorial, Minister of State with responsibility for Disability, Finian McGrath, has got Cabinet support to ratify the UN Convention on the Rights of Persons with Disabilities but no date has been agreed. Ireland signed the convention more than ten years ago but remains the only EU county not to ratify it. Once ratified, the State will be required to bring forward laws and measures to improve all disability rights. The principles of the convention, once enshrined in Irish law, will have the capacity to fundamentally alter the way services for people with disabilities are considered and delivered.

The focus of this issue of Frontline is on Autism and Rights. The contributors are individuals who advocate for, live with and work with individuals with autism. They bring a unique perspective which is based on their knowledge and understanding of their life experience of both living and working with this population.

There are so many facets of autism that need to be understood by policymakers, government ministers, state officials, agencies, parents, educators, health professionals and the community to ensure that people on the autism spectrum are enabled to reach their potential and become active and participating citizens. Gaining an understanding of autism and what it means for people on the spectrum and their parents requires careful listening and learning. Unfortunately, many people in the country are poorly informed or uninformed.

Many uninformed people, including politicians, can and do fall into the trap of thinking that the provision of specialist autism services is too expensive and adopt the default position that services and supports for people with learning or intellectual impairments are suitable for people on the autism spectrum.  Some also think that individuals with autism can be fixed or even cured. What is not understood is that people with autism are unique and when you have met one person with autism that is all you have met. Autism is different from other learning or developmental delay conditions: autism is autism.

What also is not understood is that when there is a failure to provide early and appropriate diagnostic, education, health and employment services then the cost of these much-needed services becomes far more expensive as people age.

Autism is a lifelong neuro-developmental condition that affects how people perceive the world and interact with others. Autism is a spectrum condition; all people with autism share certain difficulties but being autistic will affect them in different and personal ways. All people on the autism spectrum can learn and develop, with the right supports, and all can be helped to live a more fulfilled life of their own choosing.

The struggle for parents to obtain all the supports and education that a child or adult on the spectrum needs can be very difficult. As a result, parents and the person with autism can become disillusioned with the system and feel emotionally and physically drained. Sometimes circumstances (including providers and funders) appear to conspire to make it hard or even impossible to put in place right services and supports for the right person.

What is needed is leadership from politicians, from all parties, to put in place a national autism and education strategy. This strategy needs to be based on an understanding and acceptance of autism and needs to be embedded in our health, education and social services. The prevalence of autism spectrum disorders needs to be identified through the national census and this data then used to inform the planning and delivery of appropriate person-centred interventions and supports.

Frontline is fortunate to have contributions that discuss the range of challenges that a diagnosis of autism can bring to people’s lives which are not often or easily understood. These contributions will inform the reader of the many difficulties experienced by their carers and advocates.

We wish all our readers a very happy, bright and positive 2018.

MitchelMitchel Fleming.

 

 

 

Geraldine GraydonGeraldine Graydon.

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