20 steps to prepare for an Autism Spectrum Disorder (ASD) appointment, with our physicians
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.
o If you have your own copies of your child’s records consider scanning them and placing the information on a thumb drive and or CD. This will result in a searchable and inexpensive means of being able to share your child’s records.
o Our patient portal will easily accept this upload and will place the records in a permanent available area for you and our physicians to view.
o Consider a 4gig or more sized thumb drive. This will also allow you to save the pictures and video which will document MRI’s , behaviors and other findings.
o If you don’t have your own copies of your child’s medical records, you will need to contact your current pediatrician’s office and send them a Records Release Form, that we supply, to get the records. There should be no charge for this process.
o You can have the office copy and mail the records to us directly which will typically incur no cost to 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.
o 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 keep paying for copies repeatedly.
o Also note, that there are a number of types of forms in the 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.
o The GF/CF/SF 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 would ask that you seriously engage in this therapy. Considering that it can always be reversed and will cause no harm and will take a two or more week trial to become effective, 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.
o If your child isn’t already on the CF/GF diet, TACA has a starter guide here and you can apply for a TACA Parent Mentor to help you if you would like 1:1 assistance.
3. Get connected
o 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.
o If you don’t live in a state with a TACA chapter, you can join the TACA-USA Yahoo group at and get lots of support and ideas.
o Apply for a TACA Parent Mentor who can help guide you 1:1.
4. Start reading
o TACA’s website has hundreds of hours of reading available for free, 24 hours a day.
o Learn about the basics on your own (with the help of TACA, other parents, books and the internet) for free, this will allow for less medical charges and makes our job as physicians easier.
5. Insurance coverage or not
o 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.
With that said, 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. Many time the laboratory fees can be billed to your carrier, even when the office call is not reimbursed.
o 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 the doctor wants to use, be clear with them. Ask them to order as many through the insurance company covered labs as possible.
o Autism treatment is a marathon, not a sprint so learn how to use your money wisely, or you will run out.
o 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
o List all of their challenges, medically and behaviorally. Make particular notes for poop, sleep, skin, stimming, eyes, speech, safety and behaviors. We will provide you with a copy of an ATEC form to fill in, prior to the appointment.
o 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
o Know 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.
8. It takes a village
o Ask the our 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 your prefer to not 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
o Agree with your spouse BEFORE you go in on your roles at the appointment and how much money you have to spend. The doctor is not a marriage counselor and at hundreds of dollars an hour, you don’t want us to be wasting time.
10. Go slow
o When you are new to the many medical treatments for ASD, you may want to try 100 treatments…… all at the same time, but 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 what 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
o 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 the we start prescribing, make sure you take notes on the order of implementation, or refere to our information sheet on your patient portal.
o 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 cost a ton of money, but return only a small benefit to YOUR child’s progress.
13. Be prepared
o Ask what is SUPPOSED 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
o Learn what medical tests are commonly ordered by physicians considering your child’s condition.
15. Supplemental purchases
o Know that we sell supplements in house and online at a reduced fee. . You are not obligated to buy any items from a us, however we have done your shopping and know which brands give the best results and offer a discount from retail to all our patients
16. Ask for emergency contact information and rates
o We will accept phone and email consults and will charge for them dependent on the time needed. In the event of an medical emergency ,we would want you to call 911 and arrange for an immediate emergency room appointment. We will return your call as soon as possible, if we are present and during office hours or the next day if after hours.
17. Ask about next steps
o 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
o Know that you must go back in person once per calendar year in order for a usto write you a prescriptions of any kind. The rest of the follow-ups can be done via phone and email if you are too far away to see us in person.
19. Save all your bills and receipts
o You can write off travel and medical expenses, including diet foods and supplements, on your income taxes each year.
20. Remember, there’s a lot to learn and it’s 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 your needing 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’re desiring for your child can be achieved.
Copyright Center of Health™ 4/2014 For permission to reprint this article, please contact the author.
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