What to Ask the Specialist Who Diagnoses Your Child
Hearing a diagnosis of autism can be emotionally blind-siding. Even though you may want to take the results home and crawl into bed, you can’t. You must use this office visit as an opportunity to get started on helping your child. Because hearing a diagnosis will no doubt be troubling, be sure to take notes so that you can more fully understand the implication of the diagnosis and how you can get your child help.
Here are questions you can print out and bring with you to your doctor or specialist:
- What exactly does the diagnosis mean? You may hear a lot of technical jargon that you don’t understand. Ask for explanations. If you’re told your child has PDD-NOS, ask what this means and ask if PDD means autism. Ask more questions until you fully understand the diagnosis, such as: What symptoms indicate that my child has this diagnosis? What other symptoms does he have that indicates autism?
- What do the test results mean? Ask specific questions about the evaluations. Again, there will be lots of confusing terms that your specialist can explain. For example: What does it mean that he has “low tone”? or How was his IQ determined? or What do you mean by perseverations? The more you understand, the better you can help your child.
- Where is my child on the autism spectrum? The spectrum of ASD ranges from mild to severe. Sometimes, specialists will refer to a child as having “high-functioning autism” or “low-functioning autism.” Find out your doctor’s impressions of where your child is on the spectrum. This information can help you get the necessary treatment for your child.
- Should I seek out another expert opinion? If you disagree with the initial diagnosis, then you should seek out the help of another specialist, such as a developmental pediatrician, child psychologist, child psychiatrist, or autism specialist. Even if you do agree with the diagnosis, depending on your child’s needs, you may need to seek out another opinion. For example, if your child has significant behavioral issues, you will need to see a certified behavior analyst. Ask the evaluator for recommendations for other specialists who can be helpful. Your child may also be able to be assessed by an entire team of specialists through your Early Intervention program or school district, at no cost to you.
- What services do you think my child will need? How many hours? Ask for specific recommendations for your child’s educational and treatment services. For example: Do you think my child should be in a special school for autism or a mainstream school? If the specialist recommends a specific treatment such as ABA, ask how many hours per week. Make sure you get these recommendations in writing. This letter can help you in the future when you are trying to get services for your child. If the evaluator does not know, ask for a referral to someone who can answer these questions.
- What can I do to help while we’re waiting for treatment to begin? Ask for specific suggestions on how to help your child right now. Your evaluator may be able to offer advice on how to reduce certain self-stimulatory behaviors or tips on how to increase certain skills. If your evaluator does not offer any recommendations, ask for a referral to someone who can.
- Can I have a copy of all of this in writing? Make sure to get copies of the evaluations and recommendations. These can be used to help you make your case for services with various government agencies.
- When can I come back for a follow up visit? Make the appointment for your follow-up visit now. There are often long waiting lists for specialists.
- Who do I call now to start treatment? Ask for specific referrals for treatment providers so that you can act quickly to start treatment.
What About a Prognosis
Even though you might want to ask, “Will my child get better?” or “Will he go to a regular school?”, no specialist has a crystal ball, and no one can predict your child’s future. Focus more on what you and your specialist can do to help your child now. There are effective treatments out there, so have hope. Your optimism and perseverance will mean more to your child than any doctor’s prognosis.