Parent and Advocate

"My child has been diagnosed with Autism". I have heard it before, time and again. Looking into the eyes of these parents lost in this new world, confused, and some even angry. These feelings are all normal. I was there a little over a year ago myself. When your child has been diagnosed with a serious, lifelong disorder, you, mom and dad suddenly become their advocate. There are agencies that exist who will advocate for you, but I believe no one will ever fight for your child like you will.

So what is advocacy? The definition of advocacy is "public support for or recommendation of a particular cause or policy". Advocacy is so much more than that. Through advocacy people are able to gain access to education, services, and legal rights. There are hundreds of organizations and groups that advocate for Autism. A small example is our Facebook page, Aiden's Heroes, a large example would be the controversial group Autism Speaks. There are eight kinds of advocacy, but parent advocacy would fall under a kind of self advocacy or possibly uninstructed advocacy. Self advocacy is "speaking up for yourself or stating your own needs. Uninstructed advocacy is a person who speaks or makes decisions for someone, unable to articulate their interests themselves. 

You begin advocating when you tell your friends and family about Autism. You probably started giving them some facts such as: "Autism is a lifelong, developmental delay, disorder. One in 68 children has been diagnosed with Autism Spectrum Disorder and Autism is five times more common among boys than girls." That was probably pretty close to your first advocacy speech. 

So how do you advocate? You don't need any special degrees or licenses to be an advocate for you or your child. A lot of ASD individuals turn into self advocates so they can fight for their own rights and desires. This is ultimately the role you want to model for your child, especially if they are high functioning or Aspergers. 

First, you must educate yourself. Talk to doctors; ask questions, read a lot. Watch YouTube videos and read internet articles. I have always said you'd be amazed what you can find on Google. If there is a behavior or issue look it up. That is how I found out about the link between seizures and autism. For more on seizures and autism please feel free to search the web or start with my blog on the topic. Search for state provided resources like CARD. They provide educational services for free to family of Autistic individuals. 

Second, join groups. We are member of the Autism Society of Greater Orlando, but there are other organizations that function in this way. Look around in your local area. Joining a group is great, but participate in activities they set up. A good friend of mine once told me that Autism is like an island and the more people you talk to the more bridges to other islands you build. We, in the autism community, are resources for each other.

Third, whatever you do, seek the best. Find the best help, care, and support. There is no replacement for good people. Surround yourself and your child with people who genuinely love what they do and care about your individual family. Find organizations who will work with you both financially and personally to support you. Do not accept mediocrity and do not let people brush you off. Sometimes you'll have to fight for your child for reasons you would never expect. It may even hurt, but you take the brunt so they don't have to. It’s a lot of hard work, but in the end it is worth it.

Remember, you can do this. Advocacy is as far reaching as the internet and government organizations and as close to home as your local schools and family members. Your mission has been given to you, whether or not you ever expected it is in the wind now, it’s here. At times you will wonder why, the stress and pressure will feel overwhelming, but in other times you will find happiness and relief. You can do it and remember we are always here for you at Aiden's Heroes. Any questions or just in need of support it’s just an internet message away. Good luck!

For more resources here are some good sites:
Advocacy Can Make All the Difference
Autistic Self Advocacy Network
Advocacy and Autism