How can we best understand and advocate for autism?

Hi there, today I want to take a moment to talk about something incredibly important. This is specifically for those of you who have recently received a diagnosis of autism, or for those who know a child who has just been diagnosed. My name is Dr. Elle, the founder and creator of Ellevate Autism, and as a speech-language pathologist with over 25 years of experience working with children on the autistic spectrum, I understand the journey you are beginning.

The Diagnosis: What to Expect

When you first receive a diagnosis of autism, it can feel overwhelming—like being hit by a ton of bricks. But I want you to know something: Autism is not bigger than you. It is not greater than the love you have for your child. This realization is crucial as you navigate this new chapter in your life.

You might have had hopes that the diagnosis would point to something "easier" to manage, something that felt more manageable. I get it. It’s a hard moment, but it’s important to keep in mind that autism does not define your child or your relationship.

You Did Nothing Wrong

Another key point I want to stress is that you did not do anything wrong I’ve heard so many parents express guilt, wondering if their actions led to their child’s diagnosis—thinking maybe they didn’t talk to their child enough or were too busy with life. Let me reassure you: Autism is a neurological difference with no known cause. There’s nothing you could have done to prevent it.

In the U.S., we are currently seeing a staggering statistic: 1 in 39 children is diagnosed with autism. This is a significant number, and it’s crucial for you to understand that you are not alone in this journey. 

Finding Community Support

Getting the right support network is essential. Whether it’s a local support group or an online community, you will find immense comfort and wisdom from those who have been on this path longer than you. I highly encourage you to join our community at ELLevate Autism—it's completely free. You can ask questions, vent, and access resources that I will share as the community grows. The link is in the description, and I’d love to see you there.

Next Steps: Navigating the Educational System

Understanding the educational system is crucial once you've received a diagnosis. If you received the diagnosis from a medical professional, it’s important to share this information with your child’s school. However, prepare to face some challenges; sometimes schools may not immediately accept a diagnosis given by your pediatrician or insurance provider. Each organization has different protocols and requirements, so you’ll need to ensure you’re covering both medical and educational bases.

Here’s what you should do:

1. Request a Formal Assessment: If your child has received a diagnosis, formally requesting an assessment in writing from your school is the next step. This includes evaluations for psychological assessment, occupational therapy, speech therapy, adaptive physical education, and educational assessment.

2. Know Your Rights If your child is between the ages of 3 and 22, your local school district is responsible for providing support services, even if your child is not yet enrolled in school. You have the right to request an assessment in writing, which will set off a timeline for your child’s evaluation and necessary services.

By taking this step, a 60-day timeline begins, ensuring that your request is processed and your child gets the support they need.

Navigating your child’s autism journey can be both challenging and rewarding. Remember that you are not alone; there is a supportive community waiting for you, and together we can advocate for your child’s needs. Autism may change things, but it doesn’t change the love you have for your child or the potential they possess.

Thank you for tuning in. I hope to see you in our Ellevate Autism community, where we can support each other on this journey. Take care, and remember, you are stronger than you think.