Answers About Complementary and Integrative Medicine—Autism Toolkit

How do families learn about CIM and alternatives to traditional medicine and educational practices?

Most families learn about CIM online, in books, in other media, and from other families. There are still not many studies of these methods in peer-reviewed scientific journals. Peer-reviewed means that other scientists have looked at the studies and made sure they were done well.

You will want to understand the evidence for any treatment you want to try for your child. Questions you might ask include

• Has it been published in a research journal where experts have reviewed the study and the results?

• How good was the study? Did it have enough children in it to make the claims it made? Was the treatment the same for all children? Was there a placebo (substitute with no expected effect, such as a sugar pill) so that the results could be compared with results of children not receiving the treatment but receiving similar attention? Did the children get other treatment that would change the result?

• Will your insurance cover it? How much will it cost? Most health care insurers will not cover treatments that are not evidence based.

• Will my child miss or have to stop other treatments to use it?

• What are the side effects? Every intervention or treatment has some potential side effects.

How do parents decide if it's safe to use a CIM treatment?

Many adults in the United States use CIM treatments themselves. Parents who use CIM treatments on themselves are more likely to use them with their children.

You can work with your pediatrician to look at the evidence for a treatment you are interested in and decide together if the chance of a benefit is worth any risk from the treatment.

Because there is little science to guide parents in CIM use, it is important to try any treatment step-by-step. Discuss with your pediatrician any CIM therapies you are thinking about.

Children with ASD learn skills and grow up, so over time, many children may seem to improve with or without a CIM treatment. It is important to also stop a treatment at times to see if it was helping. If it seems like it was not helping, you might want to stop it for good. If it seems like it was helping, restart the treatment and check again to see if the treatment keeps working. This can help you see if changes in your child are because of the CIM treatment or if they are because of something else. It is also important to only change one therapy at a time so that you can evaluate any results.

Are CIM methods harmful?

Some might be. For example, no one knows the long-term effects of high-dose vitamins or supplements in young children. Some vitamins may be given at doses high enough to cause side effects. Dietary restriction might also decrease needed nutrients.

Some CIM treatments, such as chelation and intravenous immunoglobulins, have known side effects and may put a child at risk. For example, chelation can cause seizures, heart arrhythmias, and kidney problems. Intravenous immunoglobulins are used to treat severe immune deficiencies but can cause allergic reactions and blood clots. Others, such as stem cell therapy and hyperbaric oxygen therapy, have not been shown to work for ASD at this time and have risks. Stem cell therapy can cause the growth of tumors. Hyperbaric oxygen can cause the eardrums to rupture.

There are costs for CIM treatments, and each family must decide if they can afford them.

Should I tell my child's pediatrician if I am planning to use or using a CIM therapy with my child?

Many families do not think that their child's pediatrician needs to know about a CIM treatment because they can get it without a prescription or from a complementary provider. Families may be concerned that their child's pediatrician may not understand the treatment or may not approve of it.

It is important to tell your child's pediatrician about all the treatments you are using for your child. This way you can check for side effects or problems with other medications or treatments your child receives. If your child is on the gluten-free/casein-free diet, for example, your child's pediatrician can help you see if your child is getting enough calcium and vitamin D. He may then refer your child to a registered dietitian if there are concerns. If the pediatrician explains that he does not know about a CIM treatment, you could learn about the CIM together so that you can discuss benefits and risks.

In a medical home, which is not a place but a way of working together to care for your child, families and doctors partner to plan health care. It is important for families and pediatricians to have an open conversation about CIM treatments.

Your child's doctor may not agree that the treatment you wish to try has enough scientific evidence to support its use. But you still need to discuss it so that your child's doctor can help you keep an eye on your child for side effects or response. You and your child's pediatrician are partners in your child's health care.