Getting Started: Diagnosis and First Steps to Take after Diagnosis

If your teen does not have a diagnosis yet but you suspect they are autistic, an important step is to get a formal diagnosis and start intervention as soon as possible. Milestones is here to help you get started and can support you at every stage.

It is not unusual for teens to be diagnosed at this age. Some teens are diagnosed later as their families and school teams see their social interactions which get more complex as people get older. Autistic individuals sometimes compensate with their other skills.

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.

With the abundance of online information, your teen may be thinking about whether they are autistic and may ask you about it. Or they may express issues they have that might be characteristics of autism. For example there are a number of websites that give an option to complete a survey about whether a person is autistic. These website surveys may or may not be accurate.

Contact a neurologist or psychologist with experience in diagnosing autism. The Milestones free autism Helpdesk can provide more information about the type of professional to consult. A school assessment and plan described below may provide services and accommodations to help your teen.

The Milestones First Diagnosis Tool Kit provides more information about diagnosis and interventions.

Also ask your local school district for a free assessment of your teen. Request a Multi-Factored Evaluation (MFE) from your school district, which is an assessment of your teen’s skills and needs. Your teen may qualify for an Individualized Education Program (IEP) or a 504 Plan.

These are two different options that can give your teen accommodations through your school district. An IEP is the legal document that sets your teen’s yearly educational goals. It is designed to meet the educational needs for a teen who may have a disability. It is drafted by a group of team members geared to obtaining the best educational support for a child.

A 504 Plan provides a teen equal access to education and may include accommodations. It is part of the Rehabilitation Act and the Americans with Disabilities Act. A 504 offers fewer rights and benefits than an IEP and does not need to be a written document.

For more information about the difference between an IEP and a 504, read the Milestones School Tool Kit (see FAQ #5), and this Wrightslaw page. You'll find more about what a 504 plan is and the difference between an IEP and a 504 at these Understood.org pages. Check out the Education section of the Milestones Autism Planning (MAP) Tool for more information.

Trust your instincts if you have concerns and ask your doctor to assess your teen. 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. If you disagree with the school’s evaluation of your child, you may be able to request an Independent Educational Evaluation (known as an IEE) through a specific process which you can read about on this Wrightslaw page.

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 teen’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 teen. You don’t have to do it alone. Milestones is there for you with our free 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 who you feel have the experience with autism, approach and level of supportiveness you’re seeking and who you and your teen 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 teen 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. Your child’s doctor or therapist may be able to introduce you to other parents. Or a disabilities nonprofit in your state like the Ohio Coalition for the Education of Children with Disabilities (OCECD) may have parent mentors available. The Milestones Resource Center also lists some support groups.

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 teen with special needs 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) also offers guides for parents including The Life Guide Through Autism series