Advocacy. What does that mean exactly? It’s when you fight for someone or something, right? In my case it would be for my son with autism. A common theme among the autism community is the importance of advocating for your child. I remember thinking, “Advocate for what?”
A self-proclaimed people pleaser the idea of speaking up about anything even if it was for my own son was terrifying. I worried that advocacy meant going all Erin Brockovich on the school system, doctors and therapists. I was afraid that I wouldn’t have the courage to speak up and fight for my son when the time came.
It’s been three years now and I’ve learned that advocating is less about storming the castle and more about seeking services, staying informed about my son’s disability, and asking for and accepting help. It means listening to my instincts and speaking up when something doesn’t feel right.
I didn’t know it at the time but I was advocating for my son when I told the physician’s assistant that I was concerned about autism and asked for a referral. I was advocating for my son when I called Early Intervention and told them that my son had been diagnosed with autism and needed an evaluation for services. I advocated for my son when I signed him up for swim class and met with the coach to inform her of Owen’s abilities and disabilities prior to his first class.
I also missed opportunities to advocate for my son. I did nothing when an aide got nose to nose with Owen and insisted that he look her in the eyes to say hello. I knew that this made him extremely uncomfortable, it would have made me uncomfortable. I watched with that uneasy feeling in my stomach, wanting to say something on his behalf but lost the nerve and did nothing. Eventually, I stopped beating myself up over it and threw that experience onto my ever expanding live and learn pile.
I recently had the opportunity to attend an autism conference among the medical community. I was surprised at the lack of knowledge and understanding about autism among them. It was an eye opener for me to be a parent sitting among medical professionals speaking very casually on their opinions about autism. One person commented, “I think that autism is over diagnosed and that a lot of kids just have behavior problems that parents don’t want to deal with so they use the “autism” diagnosis as an excuse.” This was said using air quotes over the word autism.
I realized how insulated I’ve been as a stay-at-home Mom who’s been surrounded by knowledgeable therapists and supportive family members. It’s been quite some time since I’ve been around the general public who are not personally affected by autism. I didn’t respond to that comment. Another missed opportunity to advocate.
The casual conversations in between lectures continued with flippant comments using those dismissive air quotes around Asperger’s and autism. Every child, in their opinion, was either misdiagnosed or just needed more consistent parenting, discipline, or medication. During the session for parents to share their personal stories about having a child on the spectrum, one of the women at our table said quietly to the woman sitting next to her, “I hate the parent part, it’s just listening to them whine and tell their sob stories.” I felt like someone had punched me in the stomach. Is that how people feel about my family’s story?
I listened quietly to their conversation. I didn’t want to hear this. I didn’t want to see it or face the fact that the world hadn’t changed since my son’s diagnosis. It hurt and I was speechless. I wanted to defend, to explain but I didn’t have the words. I didn’t know where to start. I was afraid that I would cry so I said nothing and felt powerless.
Shocked at the lack of understanding about autism, I’m concerned for the thousands of children these professionals see on a daily basis who may be slipping through the cracks and missing opportunities for early intervention.
Study after study shows the importance of early intervention in children with autism. If you have concerns about your child and don’t feel your doctor is taking your concerns seriously please continue to seek an evaluation elsewhere. This article from Autism Speaks provides an overview on services available to your child on the spectrum as well as links to help you find services in your area.
Feeling defeated, my first reaction was to go home and focus on helping my family and forget about everyone else. This making a difference crap is hard and I didn’t feel like doing it anymore. I resigned myself to the fact that the world was ignorant and would remain that way. There was nothing that I was going to do to change it. Suddenly everything that I had been working towards felt pointless. My Facebook page, groups and blog seemed unimportant and silly.
I was in a terrible mood the next few days. Moping about, restless, irritable and discontent. Everything in me wanted to throw in the towel, quit working on my blog, researching and sharing articles on Facebook. Lord knows it would free up a lot of time to spend with my family again. But I couldn’t shake the unpleasant feelings and was unable to relax.
I continued to pray for guidance. At one point, I stopped feeling sorry for myself long enough to realize that those people that I’m running from are the exact people that I need to be around. Suddenly inspiration returned. The feelings of hopelessness lifted. I may not be able to change the world or even the person sitting next to me but I can offer an alternative perspective to those who may have preconceived notions about autism and the special needs community.
An important part of advocacy for me now is offering a different perspective about autism in a community that is otherwise unaffected by it.
I’m learning to stand my ground and trying to do so in a calm and non-judgmental way. Although difficult, it’s far more effective than becoming angry or overly emotional. When that happens, it makes others uncomfortable and then their focus becomes more about me instead of my message.
I learned so much at that conference and very little was about autism. Nothing ever changes until someone starts saying or doing things differently. Today, I’m going to stand-up for what I believe in, for my son and for the millions of others on the spectrum and their families who are misunderstood and judged. I can be the voice that says, “I once felt that way too, here’s why I don’t anymore.”
If you have questions or concerns about your child or are having trouble getting services please send me a private message through my website or Facebook page, and I will help you get started. I’d love to hear from you!