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The Steps After an Autism Diagnosis

The Steps After an Autism Diagnosis

Your child has just been diagnosed with autism, and you’re struggling with what that means, how to best help him or her, and how you will be able to handle it all financially. Your emotions are swirling and suddenly you have to decode the foreign language of IHSS and IEPs. You are also worried that your school isn’t doing enough, or doing the right things, for your child. So, once your child has been diagnosed with autism, what do you do?

First of all, please know that you are not alone. There are many other parents in the same situation, and there are people out there with answers who want to help.

Learn the system

Do some research so you can get as much as you can out of the existing system. Talk with other parents. Get on the internet. Don’t go into meetings uninformed. Get to know common terminology and find out what rights and options your child has, including educational programs, therapies, teaching approaches, advocacy, and state and federal financial benefits.

Partner with the school

Most teachers care about your child and want what you want—success for your child. And they will probably agree that your child needs more than what he or she is receiving. But they’re all overwhelmed. Instead of blaming the teacher or the school, ask for solutions that fit within the system. Partner with the teacher and the school’s administration and suggest how you can work together.

Ask questions

You will most likely encounter multiple situations where every person you speak with—whether it is in an IEP meeting, at a resource center, on the phone with a government agency, or via email—they all know the system and the terminology much better than you. And they are all making crucial decisions about your child, whether you understand the language or not. It’s confusing and overwhelming, but you must not be afraid to ask questions. Never end a conversation until you completely understand what is being discussed and resolved.

Trust your instincts

Bottom line: you know your child best. If it doesn’t feel right, don’t do it. There will be many people involved in your child’s future, including teachers, counselors, and therapists, and they are all working hard to ensure your child gets the best. But if your child is not improving, or his or her behavior tells you that something is off, trust yourself to make a change.

Remain patient

All of this is frustrating, not to mention emotionally exhausting and time-consuming. But remember that you’re dealing with a government system with limited resources. Focus on what is going right, what is available, and what positive actions you can take to keep everything moving forward. Keep in mind that there are alternative means of support that you can explore for your child. You might consider specialized tutoring or group programs with other kids with disabilities.

And as always, if you feel overwhelmed and you need help, please contact us.

American Advocacy Group is on the front lines every day, making positive change happen for people diagnosed with Autism, Down syndrome and a range of diagnoses across the continuum. As a leading advocate for all people with intellectual and developmental disabilities and their families, and the premier provider of the support and services people want and need, we understand the system and know how to take action in regard to your best interests.


Dial (877) 762-0702 or email us at [email protected].

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