Autism Resource blog:

How to Be an Advocate for Your Child With Autism and Yourself

Mar 31, 2021
Allison Siegel and Sasha Y.
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As defined by Pathfinders For Autism, “an advocate is simply someone who: is committed to change; is willing and able to publicly share their commitment; and is open to increasing their knowledge and understanding of the issue.” 

Finding out that your child has been diagnosed with autism can be overwhelming at first, and if you don’t have much knowledge about how living with autism will affect your child’s life, it can seem nearly impossible that you will gain the tools to properly help your child live their best life. 

Advocating for your child will change as your child grows and evolves, but keeping these basic guidelines in mind will help you no matter where you are in your journey with ASD. 

1. Educate yourself

Educating yourself on your child’s specific needs within their ASD diagnosis will allow for you to be their best advocate. Start by learning about Autism Spectrum Disorder from reliable sources that are backed by science. There is a whole wide world of opinions out there, so making sure that you understand what having ASD means for your child will be especially important. Some good places to start include Autism Navigator, Autism Society, Autism Speaks, and The Autism Research Institute.  

Educate yourself about your child’s specific diagnosis as well. Read through the diagnosis report that your doctor gives you after your diagnostic evaluation and ask questions about anything you may not understand. The diagnosing doctor may even be able to set you up with someone at their office or hospital who can help you navigate what your diagnosis means for your child.

2. Simplify your communication

One of the most important skills you’ll need to build is your communication skill. While emotions can run high when you’re trying to get the best for your child, it’s important to keep your points simple and clear. Strong communication will give you better answers, build stronger relationships with others on this journey with your child, and allow for you to feel confident in your advocacy.

3. Be proactive

It’s easy for life to get busy while raising a child with ASD. There may be a long list of things you’d like to accomplish - like calling your new provider to change an appointment, filling out paperwork regarding an IEP, or searching for a new program for your child to participate in to build social skills, and it can be hard to accomplish everything while living your daily routine. Keep a list of these items somewhere close by so that you can stay on top of them and your child can benefit from all of the good ideas you have.

4. Keep your child in mind

While advocating in things like IEP meetings, it can be easy to get emotional as tensions can run high between a parent and another party. Know that it may be likely that you will disagree with a third party person and be ready to help calm yourself down. Focusing on the fact that you are there for your child and that you just want to reach a conclusion that will best help them can help you to avoid unnecessary or overwhelming disagreement.

5. Know your limits

You want to give your child every opportunity and every positive experience you can, but some things may just be outside of your skill set. Professional Advocates exist as a resource and can be a huge asset to families who may need some extra help in securing the best for their child. There is no shame in needing help and a Professional Advocate may just be the bridge that your family needs into the world of ASD. A good place to look for an advocate based on your state’s laws is through the Wrightslaw website.

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