Our Lurie Center clinicians provide information on frequently discussed topics, treatments and assessments related to ASD.
Biomedical therapies in autism spectrum disorders (ASD) are most commonly thought of as complementary and alternative medicines and treatments as compared to conventional prescriptions and evidence-based therapies. Some examples are high-dose vitamins, special diets, probiotics and hyperbaric oxygen therapy.
Autism spectrum disorders are currently defined by behavior. Currently there is no blood test or imaging study that predicts or is used to diagnose ASD. No two individuals with ASD develop the exact same set of symptoms (all have individual presentations) and there may be many causes of autism. Although many genes have been linked to ASD, the basic physiology of ASD remains unknown.
In addition to the behavioral definition of ASD, parents have long noted differences in the functions of various bodily systems (such as the GI tract, sleep problems and medication sensitivity) in their children with ASD compared to typical siblings. Researchers continue to try to define the differences in physiology between these children and those who are normally developing.
There is an abundance of information available from the internet directed to parents of children with ASD. Much of it is written and supported by professionals with many credentials after their names, but the quality of the information can range from strong and evidence-based to treatment that may be unsafe or driven by financial gain of individuals or companies. Because parents observe symptoms in their children with ASD that appear to relate to different body systems in addition to the brain, the use of alternative and complementary medical treatments by parents for their children with ASD is common.
A proven or evidence-based medical or “biological” treatment is a substance given to alleviate a known symptom for which there is a proven biological cause. This implies there is an expected result due to a proven effect on a known target, which is most often not the case in ASD. Popular support for a biological therapy often also implies that it will improve the symptom for which it is given in every individual with ASD who has that symptom. This has never happened in ASD, probably due to the variety of causes for ASD and range of symptoms from one individual to another.
The goal of treatment is to improve core features of ASD (such as social communication, repetitive behaviors or associated symptoms like irritation). Below are some suggestions for undertaking and assessing therapies.
One intervention at a time is a good idea. If more than one treatment or intervention is started at the same time, it is impossible to know which caused improvement (or worsening) in behavior.
Before beginning the treatment:
• What are your goals: Do you want to improve one symptom or several?
Be aware that therapies that claim to cure a developmental disorder such as ASD are unrealistic.
• What is the desired outcome: What will define success for your child?
For example, if sleeping better or decreasing repetitive behavior, or regulating the bowel is the goal, then how many more hours should your child sleep, or how many fewer episodes of the target behavior should result, or how often should the child move his or her bowels, to be called improved?
• How will you measure success?
Who will document the number of hours of sleep, the episodes of repetitive behavior, or the number of bowel movements? It is important to keep track of the target symptom(s) and the goal over time, so keeping logs that can be shared with the child’s doctor or teachers is recommended.
• How long will you measure the target symptoms or behaviors?
Most parents look for immediate improvement after starting an intervention. Of course, all would like any noticeable improvement to become long term. Children with autism improve and worsen over time—they may cycle through “good” and “bad” functioning without any intervention at all. Others may appear improved shortly after starting any and all interventions, only to return to baseline while still being treated. Because of these pitfalls, changes in symptoms or behaviors resulting from any intervention should be monitored for at least three months.
Questions to ask and information to research about each biomedical treatment:
• What is the history of this treatment in autism: how did this therapy start to be used in ASD and what is the logic behind it?
• What does the treatment contain and how is it usually used?
• What are the active ingredients in the medication or supplement?
• What are the potential side effects?
• Is the treatment invasive (such as an intravenous treatment)? If so, what are the potential risks?
• Are there any published controlled trials for this therapy, where the drug or medication has been compared to placebo?
• Has the therapy been investigated by unbiased professionals? Whether or not a treatment leads to improvement in children with ASD should be investigated by objective parties.
• What is the real cost of the therapy to the entire family when you consider travel time, cost of the intervention itself and other related costs?
Pitfalls with nonprescription medicines:
• Treatment, with supplements and many compounds available without a prescription, is not regulated by the FDA; therefore the contents can vary widely from one batch to the next. Fillers in these medicines can cause symptoms themselves.
• The active and inactive ingredients in supplements and treatments can cross-react with prescription drugs, resulting in additional symptoms.
• Ingredients in “proprietary mixtures” (made by the practitioner themselves) are completely unknown, so parents will not be able to assess or investigate those treatments.
Only you, the parent, patient or caregiver, can decide whether the potential benefits of a particular therapy outweigh the risks.