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© 2023 by inTune Pathways 

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  • Kristy Forbes

Advocacy is not impersonal

Updated: Feb 25

Advocacy is not impersonal. For me, it is not hard, cold and detached. It is personal. I spend hours per week sitting with families, with their joy and their struggle. I have no wall, no guard up. We all start somewhere. All of your stories encompass parts of my stories.. There isn’t just ONE story. My stories as an autistic person, my story as the Mother to autistic children, my story as a professional. I am contacted every single day by hundreds of people, fellow autistics, fellow parents, fellow professionals. The feedback is beautiful, it is empowering, it is encouraging, it is validating. And it is touching. It keeps me grounded, your stories keep me grounded. They insure that I NEVER lose touch with reality. I never lose touch with where I have been, how I have suffered, how I moved through struggle and strife and into the light. Our family story is a happy one, it is a positive one. Each and every member of my family is autistic and we are proud. We live autism as a culture, an identity and a positive identity. This does not mean that we don’t still suffer, struggle, have extremely difficult times. Having a positive autistic identity, sharing and educating others about the autistic perspective of autism is not romanticising autism. Feeling good about who I am, who my children are, being self accepting and self loving and autistic is not romanticising autism. It’s being a human being, exercising our right to be okay with who we are. Having an autistic child who happens to be non speaking, who happens to have significant support needs and not spending my days suffering as a result, or openly discussing it on social media is not romanticising autism. Nor is it ignoring or denying the suffering or difficulties of others. Sometimes I cry. I sob. I’m often contacted by families who are in positions of relinquishing their family members. These are families who have learnt to see beyond a pathological model and to see the whole person. These are families who understand that the autistic person they love has little control over their bodies, families who do not know how to protect, or create space for the person they love. The autistic community doesn’t deny these struggles. I have lived it. My heart breaks. I want families to be empowered as I was, as my family was, by creating our own narrative. I want them to know that what they see in the media, the horror stories.. Do not have to be their stories too. I want families to know that they don’t have to resign themselves to a life of powerlessness and struggle, because it’s all they’ve heard, seen and been told within the walls of professional’s offices. The families in our community need to be gently lead into the light, gently. With compassion, empathy and understanding. People must be met where they’re at. When people are not heard, their trauma is triggered and this closes their eyes, their ears and their hearts. Every day I see something written about autism-about me, about my children, about my friends and family-the people I love. I see us medicalised, pathologised, reduced to inadequacy and impairment. Pure disorder. It hurts. It’s painful. And we still get up and get in there and try to make a difference. I see so much disparity, misunderstanding, resistance, anger. We are shooting ourselves in the feet. The neurodiversity movement, which I am proudly and gratefully a part of, does not romanticise autism. Some of it’s greatest advocates are non speaking autistics who have full time carers. Non speaking advocates who have been supported to find ways to communicate, who have a lifetime of experience to share with us. Compassion, empathy, gentleness. I want parents to be able to celebrate, enjoy, accept and love their autistic children unapologetically; without having to preface with qualifying statements such as “I don’t romanticise autism” or “I know autism is hard”. These are our children. Our children. They are to be loved, celebrated, accepted, enjoyed. There is no prerequisite for that. There is no side taking for me. I am a happy and proud autistic, the parent of autistic children and a professional who works with autistic families. I won’t stop speaking my truth, from an autistic perspective. Because this is who I am. Proud, happy and autistic. ----- Kristy Forbes Autism & Neurodiversity Support Specialist inTune Pathways ----- Image: indie-edits.tumblr.com