According to the Centres for Disease Control (CDC) Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that affects an estimated 1 in 44 children. It is a childhood disorder with social and communication issues, along with restricted and repetitive behaviours that continue through adolescence and adulthood.
These restrictive and repetitive behaviours impact the individual and family at all stages of life and are extremely challenging. At a young age, these challenges are often faced with the support of teachers and therapists and families feel secure that their children are in a supportive and structured environment with professionals on hand.
The challenges, however, are heightened in adulthood when the structures and supports are not there. As a special needs educator in Cyprus schools for over 20 years, I see how families are left trying to navigate an uncertain future when their loved ones graduate school. They now have a young adult whose whole world has been stripped away from them and with very few options and no support for the next chapter of their lives.
Autistic kids thrive in the classroom where structure is paramount and independence is encouraged. Moreover, they comply in a classroom situation and often refuse to comply at home. It is this compliance that helps us, as educators and therapists, get the best out of them. But this ends when they graduate and a whole new set of challenges arise.
Transitioning to adulthood is also extremely difficult for parents. I see fear and anxiety as parents realise the huge gap in services and support. Families find it difficult to prepare for the transition as there are no resources on how autistic individuals can succeed in adulthood. More than one parent has told me that post-school life is like “falling off a cliff” and there is no safety net.
The hard reality is that in Cyprus there are very little supports for young autistic adults who have the same needs as their typical peers. They want to socialize, they want independence and they want to feel self-worth. Instead, they are often at home with their parents and increasingly isolated as there are few, if any, inclusive job programs and very few social outlets.
Parents, of course, play a significant role in the transition process. I speak with parents every day and they are all anxious about what will happen to their kids when they are no longer around. But more than that, they want to put their kids on a firm footing for independent living with the necessary supports. The first step is the smooth transition into adulthood and facing the typical challenges of this transition with the necessary resources and supports.
Civil societies around the world are acknowledging that there is an aging autism population that has unique needs. They are addressing these needs through group homes for independent living, integrated job training programs and sustainable life skills. There is now a movement, a new NGO, advocating for such resources in Cyprus.
I am one of the founders of this NGO, Voice for Autism, because I see the need for encouraging and supporting independence, inclusion and empowerment among people with disabilities. Living independently with the necessary supports is also a human right and this is something we are advocating for. Being treated with dignity is also a right. This is a vulnerable community that needs vital supports in place before their parents are too old or pass away.
As a society we need to put the hardware in place: create group homes, community-based day programs, integrated job-training programs, dedicated classrooms in universities etc. As professionals we can help with the software: educating social workers, caregivers, educators, police officers, and the community-at-large regarding the unique needs of young adults on the spectrum and their families.
A coordinated approach from all services will create social inclusion and a sense of belonging in a world that right now feels very lonely. Combining the hardware with the software will provide invaluable support to families as their loved ones transition into adulthood with a vision of a bright future.
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Andrie Christodoulidou is a founding member of Voice for Autism. She has been a Special Needs Educator in public schools in Cyprus for over 20 years and is a Certified Autism Specialist. She has trained teachers on working with autism, organized conferences and seminars, and created outreach programmes.