When I started blogging, the parts of the autism blogging and research world that most spoke to me, were those focused on children. There are many reasons for this, but there are three I want to briefly mention at this point:
(1) Autism, to me, was something about my son – a child – so that was my primary reference point and experience with autism; it was the framework that made the most sense and meant the most to me as a mother. (2) My focus was on helping my son and helping others to understand my son, and so I needed and wanted to know about how to deal with a young child facing the challenges of growing up, complicated by the challenges of autism. And (3), I had no idea what would become of my son as he got older – how severely affected he might be – so reading accounts only told through the eyes of adult autistics who were high functioning enough to write such accounts, seemed to be at odds and potentially disconnected from what I needed to know to help my (as then) severely affected son.
But I’ve learnt a few things over the past two years.
I’ve learnt that many of the struggles are the same in adulthood regardless of the severity of the autism, most especially in the area of social communication. So regardless of how severely my son may end up affected in adulthood, I need to know about and learn to help him best with those challenges which – to some extent – all adult autistics have been through. They need not be the same “level of functioning” to provide relevant and useful suggestions based on their own experiences.
I’ve also seen my son move his steady way down the severity levels, from severe to somewhere between mild and moderate, in the space of only a few years. Imagine what could happen over the next ten years as he nears adulthood. It may turn out that the experiences and knowledge of the most capable autistic adult, could be of most relevance to his life.
I’ve learnt too that though I will always be there for him and love him like no one else can – like only a mother can – that he will come one day to be part of the adult autism community. How in-depth his involvement is in that community will be up to him. But after I am gone, that community will still be there, advocating for him and supporting him and understanding him. I need to look to that community, listen to what they’re saying is hurting and helping them, and help make things better for my son’s future with their guidance.
Through reading the views and experiences of autistic adults, I have had many of my presumptions and views challenged, and always for the better, because of the added awareness and new perspectives it grants me, and thereby helps me to better understand and care for my son and the adult he will become. I do not agree with everything an adult autistic writes; that would be impossible since they do not speak with one voice. But I listen. And I learn. And I try to be patient and keep an open mind. They need to be heard, just like I want my son to be heard when he reaches adulthood.
Autistic adults are as individual and different as autistic children are; I still do not hold the view that autism defines and informs every part of who my son is. He has his own personality, beliefs, preferences and interests. But what he has in common with these adults is important, and interesting, and will help me to help him towards a happy and fulfilled adulthood. So I especially look to those adults who have had successes and found happiness, because they help shine a path for my son to do the same.
For now, my son is an autistic child. However I need to not just look to his childhood challenges, but also to his increasingly bright future, in order to help him be everything he can be: an amazing, autistic, adult.