Quick Start Guide to Autism Advocacy

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I started this blog in the middle of my last semester of my Master’s Degree. I probably shouldn’t have done it then. But, it’s too late now. I know why I did it, because if I put it off, I would have never launched. I needed to just launch. And so I did.

And…I wasn’t ready.

In the middle of tests, assignments, dealing with the boys’ school and therapies, etc. I was being ripped in every direction and I didn’t see how I was going to devote the kind of time I wanted to something I have been wanting to do for so long. But I did it.

And I couldn’t be more proud. But I haven’t done what I started this blog for in the first place. Helping others. I don’t want to be another blogger who tells you about how hard it is to be a special needs parent. You already know that. I’m all about helping others.

Whether it’s assisting another with resources on a variety of apps for communication, or how to make your home sensory aware, etc. I am all about solutions. I am all about advocacy. Enacting real, meaningful change to help those with Autism reach their fullest potential and live happy, healthy lives.

Sure, I’ll do those “day to day,” “look into our lives” types of posts. I’m not always serious. But I really wanted to show others the power of advocacy. Newly minted with my graduate degree, I am now free to help others who want to advocate for their child beyond the IEP meeting.

What is an Autism Advocate?

An Autism Advocate is someone (hopefully you) who helps those with Autism access the services and supports that they need to live a fulfilled life, one full of happiness, love, and good health.

Autism is the fastest growing developmental disability in the States. It is important that those with Autism have access to the care and supports they need to live as independently as they can. Children with Autism do not stay children with Autism. It is imperative that whatever supports, resources, and services offered extend throughout their lifetime.

We need more Autism Advocates. If your child is school-aged, chances are you’re already a parent advocate. You know what it is like to advocate for your child. Choosing to advocate beyond the school system and for others beyond your child requires more effort and time, but you already have a foundation of advocacy to build upon.

How to become an Autism Advocate?

This is a question I get a lot. There’s no program you go through and boom! You’re an advocate, here’s a certificate (actually, there is, see if your state’s disability council offers advocacy and leadership programs). But seriously, I just showed up in Austin one day and started talking to legislators, telling them our story. And when I left the Capitol, I was an advocate. If you feel you aren’t ready for that just yet, read on.

Think about what matters are important to you.

This is important. How can you advocate for something if you don’t really know what it is you want? I know that I want access to medicinal marijuana for my boys. I know that I want to do something about the decades-long waitlists for Medicaid waiver services. ABA services are not covered by Medicaid in Texas right now (though this might change soon, *fingers crossed*) (edited to add: ABA is now covered by Medicaid in Texas).

First step recap, know what it is you want to fight for.

Start with Google.

Seriously. Google is quite possibly the best thing ever. After bourbon. Start here. Search for advocacy groups in your area. Many have individuals you can speak with that can help you with your advocacy efforts.

Really good advocacy groups will have a list of their efforts somewhere on their site. You can see what they are working on and if you want to jump in with them on their cause. I recommend this for those who are just starting out because you get to work with others on matters that are important to you, as well as learn the process along the way. Plus, there’s strength in numbers.

Autism Speaks Advocacy Tool Kit

I know many in the community do not care for Autism Speaks, but this isn’t about any of that discourse. They have a really detailed advocacy tool kit on their site. As far as I’m concerned, you ain’t gotta like them to understand that this is a useful resource.

This is just a few ways to dip your toes into the advocacy pool to see if you want to go for a swim. I hope you dive right on in. We need more voices. From parents, self-advocates, and allies.

I will continue to make posts on not only my own advocacy efforts but that of policy matters at the state (Texas) and national level.

XOXO

Tiffany

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