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20 steps to prepare for an Autism Spectrum Disorder (ASD) appointment
1. Have your child’s medical files sent before the scheduled appointment. Autism spectrum disorder patient files tend to be long and we will need time to review them.
If you have your own copies of your child’s records, consider scanning them and placing the information on a thumb drive or CD. This will result in a searchable and inexpensive way to share your child’s records.
Our patient portal will easily accept this upload and place the records in a permanent area, available for you and our physicians to view.
Consider a 4gb or more sized thumb drive. This will also allow you to save the pictures and videos documenting MRI’s, behaviors, and other findings. Another option is to set up a free Google drive and upload your files there. Or, use a free Dropbox account. Both have statements about their HIPPA compliance and safekeeping of your data. See Google’s and Dropbox’s compliance statements.
Our new service includes the use of Naturalistic Observation Diagnostic Assessment (NODA). This allows you to use your phone or tablet to take video documentation of the patient’s behaviors, which will then be analyzed
If you don’t have your own copies of your child’s medical records, please contact your current pediatrician’s or primary care provider’s office and send them a Records Release Form, that we supply, to get the records. There should be no charge for this process.
You can also have the office copy and mail the records to us directly, which typically will not cost you, however always ask. Alternately you can have them copy and give you the records. Their office will charge you for copies. Up to $1 per page, and it’s legal for them to do so.
Due to this cost, we recommend that you keep copies yourself, and either scan or photocopy whatever you need to give out to others. Always maintain the main file so you don’t have to pay for copies repeatedly.
Also note, there are a number of forms in the doctor’s file you may or may not want. Such as, if you have given the doctor a copy of any school records or private therapist progress notes, you probably won’t want to pay to get copies of them. The school already provided that to you and will do so again for either no cost or a fraction of the cost from the doctor’s office.
2. Start the gluten- and casein-free diet, if you haven’t already.
The gluten-free, casein-free, soy-free diet is one of the foundations of most biomedical treatments. I will ask you to start it ASAP, and I will not take you as a patient if you refuse.
The diet generally makes all therapies and treatments work better and provides a more accurate way to evaluate other treatments.
Since the changes can be very beneficial, I ask that you seriously engage in this therapy. It will take a two- or more-week trial to become effective, will not cause any harm, and can always be reversed. We have nothing to lose, except some symptoms. The diet allows me to focus on the other issues your child is experiencing and is very much worth the effort and cost.
If your child isn’t already on the gluten-free, casein-free diet, Talk About Curing Autism (TACA), a parent-based support organization, has a starter guide here. You can also apply for a TACA parent mentor to help if you would like one-on-one assistance.
3. Get connected
If you live in a state with a TACA chapter, go to meetings if you can or join their Yahoo group and Facebook page, which are listed on their chapter website page.
If you don’t live in a state with a TACA chapter, you can join the TACA Facebook group to get lots of support and ideas.
Apply for a TACA parent mentor who can help guide you one-on-one.
4. Start reading
TACA’s website has hundreds of hours of reading available for free, 24 hours a day. The Autism Research Institute is another resource that has learning modules and reports on research.
Learn about the basics on your own for free, this will allow for less medical charges and makes our job as physicians easier.
5. Insurance coverage or not
As physicians who deal with complex patients, we will never receive adequate reimbursement from any insurance firm. Hence our practice has reduced our fees and will not bill insurance for reimbursement.
You can seek reimbursement for the office visit and laboratory services. We will supply you with a form that you can submit to your insurance carrier. Often the laboratory fees can be billed to your carrier.
Most labs that a doctor will need can be done through insurance-covered lab companies like Labcorp or Quest. If you cannot afford the specialty labs that our physician wants to use, be clear with us. We will order as many services as possible through labs covered by your insurance company.
Autism treatment is a marathon, not a sprint. Learn how to use your money and time wisely, or you will run out of steam.
If you truly cannot afford the costs of medical treatment, there are many autism community grants and ways to save money on all parts of this journey.
6. Write down all of your concerns regarding your child
List all of their challenges, medically and behaviorally on our intake form. Make particular notes for poop, sleep, skin, stimming, eyes, speech, safety, and behaviors. We will provide you with a copy of an Interpreting Autism Treatment Evaluation Checklist Scores, known as an ATEC form to fill in, prior to the appointment. The ATEC form allows us to get a focus on the areas of main concern both physically and behaviorally.
Print out a copy of the traditional developmental milestones list and mark next to each when your child actually did them. We can send you this listing, just ask.
7. Know where you are headed
Learn what the typical path to treatment looks like so you can know what items you need to focus on first. There are many books or internet resources to consider so take the time to learn as much as possible, before the appointment. Consider focusing your learning from the scientific community, as there is no single solution. Taking the time to have a good history reviewed prior to any testing is typically one of the best approaches.
8. It takes a village
Ask the office if you are allowed to bring an audio recorder (your smartphone can record too) to the meeting as we will give you a lot of information you don’t want to miss. If you prefer not to record the session, try to bring at least one other person to take written notes. If you can bring a third person to care for the child too, that’s ideal, so you are not distracted and missing any of the important information.
Remember to make sure you pack a bag of food, toys, iPad, books, etc. to keep your child happy and engaged. These appointments are often 1.5–2 hours, so pack enough of everything to last.
9. Be on the same side
Before you go in, agree with your spouse on your roles at the appointment and how much money you have to spend. The physician is not a marriage counselor and at hundreds of dollars an hour, you don’t want us to be inefficient.
10. Go slow
When you are new to the many medical treatments for ASD, you may want to try 100s of treatments… all at the same time. This is a bad idea.
First, if your child has a reaction—good or bad—you won’t know which treatment caused the reaction. You need to know what causes which reaction so you know whether the treatment should be stopped, adjusted, or continued.
Therefore, we recommend that you wait 2–3 weeks in between any new treatments, medical, educational, or otherwise.
11. Go in order
List things in order of importance and implementation. Know what needs to be on board, before you start a new supplement or other therapy. When we start prescribing, make sure you take notes on the order of implementation, or refer to our information sheet on your patient portal.
12. Prioritize
If you have budget limitations (and who doesn’t?) cost out each proposed treatment and test, then ask the doctor to help you prioritize them within your budget. You want to start with the things that impact your child’s functioning the most first and work your way to the “polishing” items. This is very important, as some treatments may be costly, but return only a small benefit to your child’s progress.
13. Be prepared
Ask what is suppose to happen when starting a new treatment. What should it look like? How soon should I see changes? What changes should I expect to see in my child? What would a negative reaction look like? What do I do in the case of a negative reaction? How do I know if I should stop a treatment or push through the bad stage? Who and when do I call in case of emergency?
14. Standard operating procedures
Learn what medical tests are commonly ordered by physicians considering your child’s condition.
15. Supplemental purchases
Know that we sell supplements online at a reduced fee. You are not obligated to buy any items from us, however we have done your shopping and know which brands give the best results. We offer a discount on retail prices to all our patients
16. Ask for emergency contact information and rates
We accept phone and email consults and charge for them depending on the time needed. In the event of a medical emergency, call 911 and arrange for an immediate emergency room appointment. We will return your call as soon as possible during office hours, or the next day if after hours.
17. Ask about next steps
How long will it take for the tests to come back? Will our follow-up appointment be via phone or in-person? Do I make that appointment today before I leave?
18. Stay in good standing
In order for us to continue writing you prescriptions of any kind, know that you must come back in-person once a year. This legal requirement may now be changed due to COVID. The rest of the follow-ups can be done via phone, telemedicine video, and email if you are too far away to see us in person.
19. Save all your bills and receipts
You can write off travel and medical expenses, including diet foods and supplements, on your income taxes each year. Don’t hesitate to talk with your tax preparer.
20. Remember, there is a lot to learn, and it is best to follow with a consistent plan of action.
We will provide you with as much guidance as you need. Please feel free to ask if you need additional input or other aids.
The process will go forward and your child will improve. Keep the faith. Our experience has shown time and again that the changes you desire for your child can be achieved.
Copyright Center of Health™ 4/2014 For permission to reprint this article, please contact the author. Updated October 20, 2020.
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