If you’re navigating an autism diagnosis, whether as a parent or someone looking to better understand and support a loved one, you may feel overwhelmed or unsure about what comes next. In this blog post, I’ll share what I wish I’d known when my child was first diagnosed with autism. From handling emotions like grief to building strong relationships and focusing on self-care, these insights aim to guide, encourage, and inspire you on your journey. Whether you’re searching for advice, comfort, or practical tips, you’re in the right place.

1. Life Is Not Over

An autism diagnosis isn’t the end—it’s the start of a different journey. It’s normal to feel lost or scared at first, but let me tell you: life with your autistic child will be full of joy, growth, and a bond like no other. My son, diagnosed at 3 and now almost 9, has shown me that while our life looks different, it’s still beautiful. You’ll discover new perspectives, moments of pride, and incredible strength within yourself.

2. It’s Okay to Grieve

Grieving is part of the process. You grieve after an autism diagnosis not because you love your child any less but coming to terms with the dreams you had for them. For me, it was tough accepting that some milestones—like sleepovers or summer camps—might not happen. Grief can come in waves, even years later, and that’s okay. Allow yourself to feel it, but don’t stay there. The future might not match your original plans, but it’s still full of hope and possibilities.

3. Personal Relationships Will Change

Some friends and family might pull away after the autism diagnosis. I’ve lost friends because I couldn’t attend events or because they didn’t know how to interact with my son. It hurts, but it’s also a chance to find people who truly support and understand you. Seek out communities of parents walking the same path—it makes all the difference.

4. Not Everyone Will Understand

People might stare during public meltdowns or judge your parenting. It’s frustrating, but their opinions don’t define you. Focus on what truly matters: supporting your child’s growth and happiness. Trust me, the stares and judgment get easier to brush off over time. Now, when people stare, I just stare back!

5. Your Child Is Not Their Diagnosis

Your child is so much more than their autism diagnosis. They have their own personality, strengths, and passions. My son loves aircraft, so we embrace that wholeheartedly. Being autistic doesn’t limit who they are—it’s just one piece of the amazing person they’ll become. Treat them with love, provide accommodations, and encourage them to explore their interests.

6. Take Care of Yourself

It’s easy to forget about yourself when parenting an autistic child, but your well-being matters. Whether it’s respite care or carving out an hour after bedtime for something you love, take time to recharge. When you’re rested and fulfilled, you’re better equipped to support your child. Remember: one day at a time.

Now when it comes to dealing with doctors, therapists and other health care proffesionals you need to 

7. Understand the Diagnosis

Knowledge is power. Understanding your child’s autism diagnosis allows you to make informed decisions and advocate effectively. When my son got his autism diagnosis, I dove into research—reading books, medical journals, and connecting with other parents on Facebook and Reddit. Learning about where my son fits on the spectrum gave me clarity and helped me ask better questions. Never hesitate to ask healthcare professionals to explain things in detail—your child deserves that effort.

8. Let Your Child Be a Child

While therapies are important, your child’s life shouldn’t revolve around them. Early on, I enrolled my son in multiple therapy sessions, but I quickly realized he needed time to just be a kid—playing, laughing, and exploring the world at his own pace. Finding balance is key. Therapy should support their development, not replace their childhood.

8. Choose Professionals You Trust

It’s okay to walk away from a doctor or therapist who doesn’t feel right. Early in our journey, I stayed with a therapist who came highly recommended but wasn’t a fit for my son. Once I switched to someone who truly understood him, his progress skyrocketed. Your child’s comfort and your trust matter more than anyone’s credentials.

9. Focus on Quality Over Quantity in Therapies

More therapy doesn’t always mean better results. Tailor the approach to your child’s unique needs. I’ve had to reassess therapy plans multiple times to ensure they were helping, not stressing, my son. Set measurable goals and track progress. If something isn’t working, don’t be afraid to stop and try something new. Effective therapy should engage and support your child, not overwhelm them.

10. Advocate for Resources

Be proactive in finding resources and services for your child. Research federal and provincial programs, non-profit grants, and financial aids to ease the financial burden. For example, I’ve benefited from community organizations that provided workshops and tools to support my son’s development. Don’t hesitate to ask schools, therapists, or parent groups about available options—you might be surprised by what’s out there.

11. Research and Get Second Opinions

Every child with autism is different. Consulting multiple experts can provide diverse perspectives and better solutions. When we explored therapies for my son, I sought opinions from neurologists, occupational therapists, and speech therapists. Each professional added valuable insights. Don’t rely solely on one source—empower yourself with knowledge to make the best decisions.

12. Be Your Child’s Advocate

No one knows your child better than you. Your insights into their behavior, preferences, and triggers are invaluable for educators and therapists. I’ve often had to explain things like my son’s sensory needs or how he learns best. Trust your instincts—if something feels off, speak up. Understanding your rights, especially in education, can make a huge difference in securing accommodations and services.

13. Advocate with Respect

Advocacy doesn’t have to be confrontational. Early on, I learned that respectful communication opens doors. When a therapy approach wasn’t working, I shared my concerns and proposed alternatives instead of simply complaining. This collaborative approach builds goodwill and encourages professionals to go the extra mile for your child. A little gratitude goes a long way.

14. Document Everything

Keeping organized records is a lifesaver. I document medical appointments, therapy notes, and my son’s progress in a journal. When we noticed triggers for meltdowns, having this written down helped us adjust his routines. Detailed records also make it easier to advocate for services or switch providers when necessary.

15. Trust Your Instincts

Your intuition as a parent is powerful. When I felt certain therapies weren’t working for my son, I trusted that gut feeling and sought alternatives. Your connection with your child gives you insights professionals may miss. Balance their advice with your parental instincts—it’s a partnership.

16. Consider Services Before Moving

If you’re considering moving, research available resources first. I’ve looked into potential schools and therapy centers when exploring relocation, and touring facilities helped me make better decisions. Continuity in your child’s care is crucial, so take the time to plan.

Now let’s talk about everything I wish I had known when my son started school

17. Research School Resources

Before enrolling your child, thoroughly research the school’s resources. Does it have a special education program or sensory-friendly environments? When I chose my son’s school, I toured the facilities, asked about inclusion programs, and spoke with other parents. I also checked if they provided assistive devices, education assistants and had safety plans for kids with autism. Doing your homework ensures your child is placed in a supportive environment tailored to their needs.

18. The Importance of an IEP

An Individualized Education Program (IEP) is crucial. It outlines specific goals, accommodations, and support for your child. IEP meetings are a collaborative process, and your input as a parent is very important. For my son, I ensure his plan reflects his strengths and addresses his sensory and communication challenges. Regularly revisiting the IEP helps adapt to his progress and evolving needs.

19. Fully Agree to the IEP

Don’t rush to sign an IEP unless you’re fully satisfied with it. Early on, I made the mistake of agreeing to something that didn’t entirely fit my son’s needs, and it took months to fix. Now, I take my time, ask for adjustments, and ensure every detail aligns with his requirements before I sign. Remember, it’s okay to speak up and request changes just because they are professionals doesn’t mean they are always right 

20. Advocate for Your Child

You are your child’s voice. If your child needs specific accommodations or resources, push for them. I’ve had difficult conversations with educators to secure what my son needed, from speech therapy to sensory breaks. It’s not always easy, but your persistence can make all the difference.

21. Pick Your Battles

Not every issue is worth a fight. Focus on what will make the biggest impact on your child’s education and well-being. I’ve learned to prioritize—like advocating for sensory accommodations—rather than trying to address every minor concern. This approach conserves your energy for what truly matters.

22. Document Everything

Once again Keep records of all communications with the school—emails, meeting notes, and agreements. Early in my journey, I realized how crucial this was when a verbal agreement ended up not being implemented and I didn’t have evidence to show as proof. Having documentation ensures everyone stays accountable and aligned on your child’s needs.

23. Know Your Rights

Understand your child’s educational rights. Familiarizing myself with local policies and laws gave me confidence when advocating for my son. For example, I knew he was entitled to an IEP and specific accommodations, which helped me push back when those weren’t initially offered. Knowledge is your best tool for ensuring your child gets the support they deserve.

Raising a child with autism is a journey like no other—one filled with growth, challenges, and an abundance of love. While the path may look different than you imagined, it’s one that offers countless opportunities for joy and connection. By understanding your emotions, adapting to changing relationships, and prioritizing your well-being, you can navigate this journey with confidence and grace. Remember, your child is so much more than their diagnosis—they are unique, full of potential, and capable of surprising you in the most beautiful ways. If this post resonated with you, share it with someone who might need it, and don’t forget to leave your thoughts in the comments. Let’s continue the conversation and support one another on this incredible journey.

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