As a psychologist who mainly focuses on evaluations, I quickly become familiar with families. I have many frank discussions with parents where we talk about a child’s strengths, areas for growth, and ultimately diagnoses, all with the purpose of leading to better outcomes. Some welcome a diagnosis and view it as a way to access treatment, while others are fearful of labeling their child. Clinically, diagnoses are meant to communicate clusters of symptoms between practitioners to help guide treatment – but they frequently mean so much more to the family and even to the child. Autism is a diagnosis that usually carries considerable weight for the family, far more significant than simply describing a cluster of symptoms. I have seen varied reactions to autism diagnoses, ranging from relief from finally having an answer to immediate, intense fear for their child’s future, and everything in-between.
It is not uncommon for parents to have difficulty processing the overwhelming amount of information from the evaluation. As such, families often benefit from some guidance as to how to digest and cope with a diagnosis, how to process the information in the report, and what action steps to follow. Below are steps I usually pass on to parents whose child has been identified as being on the autism spectrum. These steps also apply to diagnoses other than autism, including ADHD and learning differences.
1. Read the report once, then put it away for the day.
Many parents read and re-read the report, trying to digest every part of it immediately. My advice is to go over it with the clinician in the office, read it once at home, then put it away for the rest of the day. Giving yourself permission to come back to it the next day, when you have had some time to adjust to the idea of the diagnosis, can help you view the report with less emotion and a clearer sense of how to proceed.
2. Have the rest of the day planned before you leave the doctor’s office, so you can fall back on routine.
Strong emotions are common during a feedback session. Before parents leave, I try to help them plan for what the rest of the day will look like. Try to have something low stress planned for the time following your feedback appointment, such as spending time with family, so that you have people you can talk with and who will help you cope if needed.
3. It is ok to be angry, or sad, or any other feeling – especially in my office.
I frequently tell my patients and their families that all emotions are ok. Every. Single. One. If you are frustrated, be frustrated; if you are angry, be angry. My office is a good place to get those emotions out so you can process the report and the recommendations with a clearer head. It is completely normal for parents to feel a variety of emotions in response to a diagnosis for their child. However, if the upsetting emotions begin to interfere with your own functioning, reach out for support.
4. Ask your questions.
Before you leave the office ask the questions, even the ones you are afraid to know the answers to. Try not to feel rushed. Write down questions as you are going over the report and go back to them at the end so you get the answers you need. Get contact information for the clinician so you can ask questions that arise after the appointment. Diagnosticians want to make sure you understand the diagnosis as best as you can, and that you have an avenue to follow-up if needed. Try not to “google” everything. The internet can be helpful, but it is full of worst case scenarios and horror stories that will add more stress rather than alleviate it.
5. Don’t leave the office without 3 “Next Steps” planned.
Diagnostic evaluations frequently have many recommendations, some of which are important and timely while others are for somewhere down the road. Go through the evaluations with your clinician and identify the top 3 “Next Steps” that need to be accomplished in the weeks following the evaluation. Once you complete those steps, it is likely that the next important steps to take will be clearer for you. If you are struggling with finding actions steps following a diagnosis, Milestones Autism Resources has a “First Diagnosis Toolkit” with action steps spelled out.
6. Build your team.
Be thoughtful about who is working with your child. You want to feel comfortable with and confident about your child’s clinicians and educators. Ask questions, follow through with your homework, and maintain open communication. Be proactive in helping the team members understand your child’s strengths and struggles and ensure that you are all on the same page. If you feel concern about a member of the team, including your child’s educator(s), then ask questions, listen, and clarify to try to get everyone on the same page. Utilize other team members who you feel confident in to help communicate effectively with a team member with whom you have concerns.
7. Focus on your child, not on the diagnosis.
Your child is the same child they were before the diagnosis. Your love and admiration for your child will carry them (and you) through many obstacles and will help you be the advocate they need. When you are working on progress, compare their progress to themselves, not to other children. Give your child credit where credit is due!
8. Don’t discard your plans or goals for your child.
Children live up to your expectations. The first few days after learning a diagnosis can be disorienting, and parents may feel like they need to alter their goals and dreams for their child. Resist that urge for now. Focus on your actions steps, get a good handle on what short-term goals should be for your child, and keep the long-term goals in the future. If your child is making steady progress toward short-term goals, the long-term goals will become reachable in time.