Interacting with Your Pediatrician

If you believe your child is not meeting the age-appropriate developmental milestones or you have any concerns about your child, talk to your pediatrician. Do not wait.

During your conversation with your pediatrician, it is important to be prepared. Remember, you are an expert on your child, you know them better than anyone else. You are your child’s greatest advocate.

Be prepared to discuss the developmental milestones your child is or is not meeting. Complete a developmental milestone checklist such as the M-CHAT and bring it with you to your appointment. Compare your child’s development to the chart to show your concerns logically.

• Give detailed information about your child’s behavior.

• Phrases like, “My child was speaking and now he is not”, “My child lines their toys up rather than playing with them”, “My child will only eat fish crackers and chicken nuggets”, or “My child does not respond to their name.” As you provide more detail and context for your concerns, the better the picture you create for the doctor.

• Do not hesitate to ask your pediatrician to conduct a routine developmental screening.

• Clearly express your concerns. Persistently express your concerns. Ask questions. Do not be afraid to ask any question you may have.

Ask your pediatrician if they have other patients that are on the autism spectrum. Some doctors may not have a lot of experience working with patients on the spectrum and it may benefit you to find someone who is well versed in autism spectrum disorders. Also, when you come to your child’s doctor with a story, an issue, or a question, you should be taken seriously no matter how it sounds. You want a physician to be understanding and to have solutions rather than to think that it is the craziest thing they have ever heard.

If you are not satisfied, are seeking a second opinion, or would like more information, ask for a referral to a developmental pediatrician or a specialist. Follow up.

Interacting with the Specialist or Other Professional Who May Diagnose Your Child

If you have received a referral for a specialist from your general physician, remember to go prepared. Relay the same information you gave to your general physician to the specialist. Be detailed and direct. When you receive a diagnosis, you may have a lot of questions about what it means for your child and your family. Here are a few questions to take with you to the appointment:

What does the diagnosis mean? Whether you are receiving a diagnosis of an autism spectrum disorder, ADHD, Rett syndrome, anxiety, always ask what it is all about. Gather as much information you can from your specialist on the subject. Ask how they arrived at the diagnosis, what did they see that led them to their conclusion. There will be many assessments given to your child, ask what each of them means and how the results are interpreted. Be informed about how the specialist reached the IQ determination or that your child has low muscle tone. Ask questions until you feel that you have an understanding of the diagnosis and how they reached their determination. Also, ask if you can have copies of all evaluations and recommendations. You will need these when speaking to other specialists or therapists.

What does that term mean? Eventually, you will be a pro at using all of the acronyms and jargon associated with your child’s diagnosis, but until then ask the specialist to explain things to you in terms you understand.

If autism is a spectrum, where is my child? There are three levels of autism according to the DSM-V. These levels help you to understand the levels of support your child may need at the time of the diagnosis. Terms such as Asperger’s syndrome, “high-functioning”, “low-functioning”, “abstract thinker” and “concrete thinker” are terms that some use to describe where someone is on the spectrum. Inquiring about the impact of autism on your child’s life will help you to determine the type and intensity of services necessary for effective therapies.

What benefits are there to receiving a diagnosis? Many individuals and caregivers may wonder why it can be beneficial to receive a medical or educational diagnosis of an autism spectrum disorder. Have your specialist explain the advantages to you as they see it. In the case of autism, it is important to help direct therapies and interventions as well as access to services. Please see our page for receiving a diagnosis.

What type of therapy or other services does my child need? Inquire about the types of services the specialist believes will be effective in treating your child’s specific symptoms of autism. Every individual is different and everyone responds to therapies and treatments uniquely. Therapies and services you can ask about may include occupational therapy, physical therapy, speech therapy, ABA, PRT, special education services, augmentative and alternative communication, and respite services to name a few. Ask how many hours the specialist believes your child should attend these therapies. Also, get referrals and recommendations in writing for future use if necessary. If the specialist can not answer these questions, ask to be referred to someone who can help you. See The “Intervention Page” for more information local to Nebraska.

My child has a specific symptom, who can we talk to? Some individuals experience symptoms that others do not. Specialists are often not one-stop sources for information on all aspects of an autism spectrum disorder. You may need to speak with a behavior analyst, autism specialist, psychologist, or feeding therapist to tackle specific issues or symptoms. As for referrals for professionals who will be able to answer your questions and provide necessary therapies.

When should I make appointments? Make appointments as soon as possible and always schedule return appointments before you leave the office. There are often long waits for specialists, especially ones in high demand.

Do you have reading materials to help my friends and family understand the diagnosis? It can be challenging trying to explain a diagnosis to your family and friends when you are just learning about it yourself. Ask for resources that may be helpful including websites, books, and pamphlets.

Remember, if you are not satisfied or comfortable with the information the first specialist has given you, ask your general physician for a referral to another specialist. Keep asking questions until you find the doctor or therapist that works for your family and your child.

After a diagnosis, you may need to explain to your child what Autism is and how it relates to them. This guide, Getting Started: Introducing Your Child to His or Her Diagnosis of Autism, may be a good place to start.

Interacting with Early Intervention Services

Early intervention services can be found through State resources or your local public school system. When you call your state’s early intervention services office (if your child is not yet 3 years old) say, “I am concerned about my child’s development and would like to request an evaluation. Can you help me or please connect me with someone who can?”

• Be ready to share your specific concerns about your child. You will also be asked for some general information about yourself and your child (your name, your child’s name and age, where you live, etc.).

• Write down who you speak to, the date, and what was said – you might need this information later.

• Utilize the same questions listed for a specialist for any early intervention services. These individuals may have different perspectives as well as different resources to offer you about a new diagnosis.

• Remember, you are entitled to these free services.