From Diagnosis to Starting a Plan for Your School Aged Child
Getting Started: Diagnosis and First Steps to Take after Diagnosis
We know it’s stressful to worry about your child and what the signs you are seeing may mean. The first step is to get an assessment to find out if it is autism and get support. Diagnosis and intervention with evidence-based approaches help children reach their full potential. The Milestones free autism Helpdesk is here to help you get started and can support you at every stage.
Autism is a neurological, developmental disability that can affect behavior, social interaction, communication and sensory processing. Each autistic person has unique challenges and strengths. The range of autism includes those who are mildly to more severely affected. For a list of the signs and more information about autism, visit our Autism Information Page.
The Milestones First Diagnosis Tool Kit walks you through getting a diagnosis and the beginning steps of managing a new diagnosis. The Milestones Helpdesk is here to help at each age and stage.
For a free assessment contact your local school district. Request a Multi-Factored Evaluation (MFE), which is an assessment of your child’s skills and needs. Your child may qualify for an Individualized Education Program (IEP) or a 504 Plan. These are two different options that can give your child accommodations through your school district.
To find out more about IEPs. visit the Education Section of the Milestones Autism Planning (MAP) Tool, and the Milestones IEP page. For more information about the difference between an IEP and a 504, read the Milestones School Tool Kit (see FAQ #5), this information from Wrightslaw and this one from Understood.org.
In addition, schedule an appointment with a pediatric neurologist, child psychologist, child psychiatrist or developmental pediatrician who can evaluate and diagnose your child. See our Resource Center for some names of local specialists or contact the Milestones Helpdesk for support.
Trust your instincts, ask your doctor to assess your child. If you are not satisfied with your doctor or school’s assessment you have the right to get a second opinion from another medical specialist. The Milestones Helpdesk can connect you with resources.
Many African American families and those from other cultures are not able to get their children diagnosed as early as possible because their concerns about their children are not taken as seriously as those of white parents. Girls are also not as likely to be diagnosed as early as boys. If you think your child may be autistic, continue to pursue getting help.
The Milestones Helpdesk can connect you with resources.
First Steps after Diagnosis
Every family’s situation is different. What kind of interventions and therapies are helpful will be unique based on your child’s needs, age and stage. Checking with your child’s doctor for recommendations can be helpful.
After diagnosis can be an emotional time, understanding what you need to know and what you will do next to help your child. You don’t have to do it alone. Milestones is here for you with our Helpdesk that can provide tips and answer your questions about interventions. In addition to the Milestones First Diagnosis Tool Kit, the Milestones Interventions page provides an overview of interventions, and the Centers for Disease Control has useful information here.
Begin to build your team of professionals, family, friends or religious leaders to help guide you and support your family. You’ll want to select professionals such as doctors and therapists with autism expertise who you feel have the approach and level of supportiveness you’re seeking and who you and your child feel comfortable with. You can learn more about building your team by visiting our All About ASD: Frequently Asked Questions page.
As you start to think about which kinds of therapies will be best for your child based on the doctor’s suggestions, learn more about each type of therapy and get names of providers to consider. Look them up on websites and see if they do an initial visit for you to meet the therapist and learn more about their particular approach. Be clear on the costs, whether it will be covered by health insurance and at what level. Consider whether where they are located and the appointment time slots they offer fit with your life.
Connect with other parents who have been there and can share their experiences. Your school district may have a parent mentor, whose job is to help parents of children with special needs. The Milestones Helpdesk is here to support you at each age and stage. The Milestones Resource Center also lists support groups. Your child’s doctor or therapist may be able to introduce you to other parents. A disabilities nonprofit in your state like the Ohio Coalition for the Education of Children with Disabilities (OCECD) may have parent mentors available.
Try to find some time to take care of yourself when you can. It’s not easy to find any time to yourself while immersed in the wonderful busy life of taking care of a child but taking a break can give you fresh energy and ideas. When you’re first learning about autism and interventions to choose from it can be overwhelming. Take it one day at a time and reach out for help.
Additional Resources
The Newly Diagnosed resources from Autism Speaks provides useful information.
The Organization for Autism Research (OAR) offers guides for parents including The Life Guide Through Autism series