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Transition to adulthood for individuals with autism: addressing the knowledge gap

I remember the day many years ago when my 2-year-old son was diagnosed with autism. After performing a series of tests involving toys and soap bubbles, the doctor went away briefly. When he returned, he sat with us and told us our son most likely had autism. My first thoughts after hearing the diagnosis were, will he know that we love him? Will he be able to love others? The answer to those questions was yes, but it would be some time before we learned the path our son would take. My son is now on the cusp of adulthood and, once again, our family is searching for answers. As he gets older, he asks us often what his life as an adult will be like. So we discuss, we plan, and we practice things that will help with independence, like going to the store on his own and scheduling appointments by himself. We are looking to those working in the medical world for guidance. The pediatrician who has seen our son for more than a decade will see him until he is 21-years-old. This doctor will play an important part in mapping out his transition to adult care. Our adolescent son is drawing his own map as well. He knows that his path to adulthood will involve advocacy for those on the autism spectrum. To this end he is eager to learn the latest research into autism. He was intrigued by the model put forward by Culnane et al. The ‘Fearless, Tearless’ model is designed to mitigate the gap in knowledge that comes with the transition to adulthood, to create ‘a process of shared care between paediatricians and general practitioners and to assist with the coordination of care’. This model of medical care is much needed. The authors cite a lack of communication between service providers across all sectors as a barrier. In my experience, this lack of continuity is one of the most persistent challenges a parent faces when raising a child with special needs. For the second year in a row, our son has been invited to speak to the Speech and Language Pathology students at McMaster University about his lived experience. I asked my son what his message this year to the students will be. He wants them to remember that people with autism are individuals. As they become adults, each person with autism has goals that are specific to them. He also wants people to know about challenges he found within the school system to reach his own goals. The biggest of these, he says, is the lack of a standard of care in schools. School staff often lack knowledge about the specific characteristics and needs of students with autism and the practices that effectively support these students in inclusive education settings. This knowledge gap in schools comes from barriers between education and healthcare services that need to be moved aside so that children like my son find acceptance in the school community and thrive there. For the most part, I feel that schools have given little more than a polite nod to the outside opinions of the speech pathologists, pediatricians, and psychologists who have worked with our son. Had there been genuine collaboration between educators and the medical professionals who could share a great deal about my son’s needs and potential, his journey toward adulthood would likely have been easier, especially when faced with challenging learning environments, bullying, and an education system that has not been inclusive of him. He would have felt less of an outsider and perhaps received the acceptance he deserves as much as anyone.