I recently met a young man whom I had the pleasure of being his tutor about 18 years ago. It was wonderful to see how tall and very handsome Peter* has become. Looking back, it was hard to imagine the progress that he would make in the years to follow and how much he would achieve.
When I first met Peter, he was non-verbal, had behaviour problems and found it very difficult when it came to playing and being with other children.
He has an autism spectrum disorder.
Today, Peter is a very able young man with so much potential. He can communicate, travels on the bus independently and has lots of special interests.
Sadly, after a lifetime of being fully included in the mainstream, Peter’s current opportunities are limited. The present limitations he is facing are not a result of his autism but due to the lack of opportunities, resources and appropriate support he requires to be able to live a fulfilling life and be part of our community.
Over the past 20 years, there have been great advances in the field of autism with regard to the provision of intervention and services for children, adolescents and adults. Early diagnosis, professionals furthering their studies and specialising in autism, students with autism being provided with learning support assistants, specialised autism programmes as well as resource centres and pre-vocational training programmes are just a few of the provisions that are now in place for individuals on the spectrum.
During the school years, IEPs (individualised education programmes), MAPs (making action plans) and PPP (peer preparation programmes) are just a few of the highly individualised processes of planning that are carried out to ensure that the requirements of children with special educational needs are being addressed and opportunities for inclusion accessed.
There is no doubt whatsoever that the additional provision of regular specialised intervention is of the utmost importance and is crucial to the ongoing development of the child with autism.
But what happens when our children are no longer children? What happens to all these young adults who are no longer in the educational system? Where do they go? What do they do? How do they spend the day? And what happens when they lose their parents and they are alone?
Looking at the alarming increase in the incidence of autism, the families of adults with autism are facing a crisis.
Parents of a child with autism do not want anything different than what parents of typical children want; they want their child to be healthy, have appropriate food, clothing and a place to live.
Obviously, all of these needs are not so straightforward for individuals with autism as many will not be able to hold full-time employment to provide for their own needs. Parents of adults with autism support their children, some even having to stop working to provide the necessary care. Year after year, the stress takes its toll on the parents and alternative living arrangements are sometimes sought.
Currently, a number of facilities are available that cater for adults with special needs. In addition, it is wonderful to see the establishment of standards that guarantee a specified level of autonomy and care to the residents accessing respite, day and long-term residential settings.
The provision of ‘care’ should not be the only option for persons with autism
However, as is always the case, this is not enough. The provision of ‘care’ should not be the only option for persons with autism as they are part of a cohort of young adults who are capable of living independently but still need ongoing support due to difficulties in the social and communication areas.
Many of the young adults with autism finishing their school years in recent years and today are the product of years of inclusive practice. Without a doubt, their education/support/training must continue because finishing a lifetime at school does not mean that they have been provided with all the skills necessary to live as independently as possible, hold a job (possibly sheltered employment) or be provided with opportunities to be actively engaged in society unsupported.
Autism is most definitely not a ‘one size fits all’ condition because while some individuals on the spectrum may require lifelong support and care, others at the other end of the spectrum may require minimal support such as having a mentor who visits regularly or can be contacted at all times.
Because autism is a condition that spans across a spectrum with a wide range of levels of severity, the type of support required would have to be provided on an individualised basis.
To ensure and enhance their quality of life, persons with high functioning or low functioning autism both require specialised support to cater for their unique needs. Although supported residential units are available, the setting up of autism specific specialised supported living units would be a step in the right direction, thereby providing individuals on the spectrum with an appropriate environment, support from staff who understand the condition and the opportunity to live as independently as possible.
Not only are the individuals with autism losing out to a productive life due to the lack of specialised resources but also society is as we are not benefitting from the potential of these individuals and the contribution that they can give to society.
Inspire believes that everyone has a right to equality and inclusion. Our mission is to try to help everyone with a disability achieve this. We do this by providing individuals and their families with educational, therapeutic and leisure services.
We also advocate for inclusion, educate the public, raise awareness among peers and hold the best knowledge base on disability on the island.
Our education centres provide services to individuals with learning disabilities, through the stages of infancy, childhood and adolescence.
Inspire provides two main programmes specialised for children and young adults on the autism spectrum.
The Structured Training And Education Programme (STEP) is a specialised programme for children with difficulties on the autism spectrum. At STEP, highly individualised, specialised programmes are built on evidence-based practice and strive to support not only the child but also the family and school. This is done through the programme’s open door policy that encourages parents and school personnel to come to STEP and see exactly what, why and how it is possible to make an impact on the lives of their children.
The STEP programme is offered through a multi-disciplinary team made up of tutors who are supported by speech and language pathologists, occupational therapists, physiotherapists and psychologists.
Parents are considered to be key members of the team and work alongside the tutors and the other professionals.
Their commitment and cooperation are considered to play a major part in the child’s progress.
Parents are an integral part of their child’s assessment and teaching, constantly providing information about their child’s needs, behaviour, interests and dislikes and also voicing their own concerns and priorities for their child.
Ultimately, STEP supports Inspire’s commitment to inclusion for all while providing support for those pupils for whom inclusion is not a straightforwardly achievable objective.
Specialised Training For Youths’ Lifestyle Enhancement (STYLE) is a specialised programme that caters for adolescents who have autism.
Keeping in mind that autism is a spectrum disorder, there is a wide variation in the way it affects people, thereby making the needs of each person unique.
The programme focuses on the students’ potential and their further development with the underlying objective being to help the student become more functional, thus enhancing his/her quality of life.
The programme’s main aim is to give the students the opportunity to acquire a better understanding of the necessity of social skills and to rehearse such skills in a safe and supportive environment. The students benefit from weekly individual sessions where various age appropriate areas of development are addressed.
In addition, group sessions, which are occasionally held in the community, aim to help students to transfer and generalise the acquired skills to different social situations and settings.
An important aspect of the STYLE programme is the continuation of the work carried out at Inspire and at school, thus ensuring continuity of intervention and liaison among the students’ team of support.
For adults wishing to join the workforce, Inspire offers training, job coaching, sheltered employment and training in independent living skills.
For more information contact Inspire on 2189 0000 or visit www.inspire.org.mt.
*Name changed for privacy
Doreen Mercieca is Inspire’s ASD adviser.