How to Strengthen Your Advocacy Skills as a Caregiver

Cynthia Lockrey is a speaker, writer, advocate, and mom. In this guest blog, she shares with us 6 ways to strengthen your advocacy skills for your child on the spectrum. 

Growing up in the 1970s and 80s, ‘advocacy’ was not a commonly used term. Yet, I watched my mother spend countless hours advocating for my autistic brother. All without support, guidance, or a community.

While a lot has changed in terms of autism awareness, the need for advocacy is still strong. Trust me, I know.

As a mom of an autistic child, author of Your Child’s Voice, a book on how to advocate for kids with disabilities, and a speaker, I spend a lot of time advocating not only for my child, but other autistic individuals. Why? Because I know without advocacy, my child will not receive the supports they need to go from surviving to thriving. And even with advocacy, it’s an uphill battle.

I often get questions from parents, caregivers, service providers, individuals, educators, and more on how they can advocate for an individual or themselves. So, I thought I’d share 5 tips to help you in your journey.

Understand and embrace the labels

This can be a tough one. I’ve talked to many people who aren’t comfortable with labels. But here’s the thing, labels bring understanding, research, and sometimes funding.

It’s not uncommon for an autistic individual to have other diagnoses, such as anxiety, ADHD, dyslexia, PDA, and more. I’ve found having a doctor’s letter that clearly states all the various diagnoses is helpful in showing the full picture.

Having these labels clearly listed is key to advocating for the supports an individual needs.

Go beyond the diagnoses

Now it’s time to highlight the person beyond the diagnoses. I’m sure I’m not alone in having heard, “don’t worry, I’ve taught an autistic child before,” or “my cousin’s sister-in-law has an autistic daughter.” We all know the saying – if you’ve met one autistic person, you’ve met one autistic person.

This is why we need to show the person as a unique individual. What are the gifts and strengths? What brings joy, stress, or is calming?

Each September, I meet with my child’s new classroom teacher to provide an overview of who they are. I talk about their love of Minecraft, how tapping into this love can help them engage in school, giving examples from previous years. I take time to help them get to know my child as a person – their likes, dislikes, personality, triggers, and more.

While they may have read the IEP, or talked to other staff, too often the focus is on the diagnoses and the challenges, not the person.

Taking the time to go beyond the diagnoses can make a big difference.

Know your team

Each of us has a team of support. It could include a dentist, doctor, counsellor, and others. For autistic individuals, this team is often broader, including occupational therapists, speech therapists, tutors and more.

It’s important to map out the team, being clear on each team member, the role they play, and how they can support your advocacy journey. Talk to them to find out how they can help and be clear on your needs.

My child’s team have all helped in our advocacy journey. This includes writing letters, making phone calls, attending meetings, or just giving advice.

Going back to the diagnoses letter, when I need help advocating, I ask multiple team members to write letters explaining my child’s diagnoses, their needs, and the supports they require. Why? Because while it’s easy to ignore mom, it’s much harder to ignore a team of experts.

Grow your community

A lot of my advocacy success is the result of the community I’ve tapped into. Advocacy is never a solo activity.

I’ve presented at the BC legislature with BCEdAccess, prepared for CBC interviews by asking questions in Facebook groups, been included in a House of Commons Health Committee report along with medical leaders, led a campaign to modernize language in autism assessment intake forms in BC by collaborating with Twitter influencers, and increased the EA support for my child by connecting with Inclusion BC.

Every success is a community success

It’s this community that helps me keep going on tough days, who I vent or cry to, who I celebrate with, and who I help support.

What your community looks like will be unique to you. It can be online, friends, family, colleagues, and strangers. Just make sure you are part of a supportive community.

Know your limitations

My final piece of advice – know when you need a break. We can’t do it all.

There are days when I need to put my mental or emotional health first. Or challenges that are way too big to tackle alone.

It’s okay to take a step back or hit pause.

I hope this advice helps you on your journey by improving your advocacy skills. It’s the advice I wish I’d been given many years ago, but that I’ve figured out along the way.

And know you’re not alone. There are many others who are on their own advocacy journey. Where possible, find a way to connect, support each other and even join forces.

My hope is our collective advocacy will help make the shift from autism awareness to true autism acceptance.

About Cynthia Lockrey

Cynthia is the author of Your Child’s Voice, A Guide on How to Advocate for Kids with Disabilities, is a corporate trainer, speaker and mom. She combines her 25+ years as a public relations professional with her lived experience as a sister and mother of autistic individuals. She is passionate about advocating for individuals with developmental disabilities both as a parent and through her work with organizations.

Learn more about Cynthia and read her advocacy skills blogs at www.learnpatientadvocacy.com.

Upcoming Advocacy Talk

Be sure to join us on March 31 for a talk on advancing your child’s self-advocacy skills with POPARD. Click here for more information.