1. Is the source of the information a reliable one?
Parents are bombarded with information from various sources – other parents, physicians, teachers, the media and the internet. While anecdotal reports of dramatic improvements from other parents are attractive and the suggested treatments tempting to consider, remember that the stories are often incomplete. For instance it may be easier for a parent to attribute positive changes in their child to a new medication, than to their altered attitude and knowledge regarding autism, which helps them deal with their child more effectively, and be more positive about his outcome. Even articles that appear in scientific journals may be misleading. It is important to find out whether the journal is a reputed peer-reviewed one. In a peer-reviewed journal, a panel of physicians (in medical journals) or other professionals critically and rigorously analyze the research articles before allowing them to be published.
2. Has the treatment been scientifically proven?
In order to understand the answer to the above question, every parent needs to become a little familiar with some terms related to clinical trials. In most countries before a medication is approved for use by a central regulatory organization (such as the FDA in the United States) it has to pass through various stages of research, of which the final stage is that of clinical trials. Ideally, a clinical trial should be a ‘randomized double blind placebo controlled’ one. By this we mean that the trial should involve random allocation of patients into 2 groups, one of which receives the proposed treatment, and the other receives a similar looking ‘placebo’ or ‘dummy’ medication. By the words ‘double blind’ the research participants as well as the investigators, or people conducting the research, are not aware of which of the group is receiving the proposed medication and which is receiving the placebo. The outcomes are measured depending on what changes proposed treatment claims to produce. For instance, in children with autism, an autism rating scale before and after treatment may be used. At the end of the study the difference in outcome is studied. Similar studies can be done for treatment other than medication, such as behavioural therapies, also.
3. What is the goal of the treatment?
Be wary of the treatment that claims to be a ‘magic cure’ that will resolves all your child’s problems. Such a treatment will probably never exist. If the goal of the treatment is to make your child a happy and productive individual, seems developmentally appropriate for your child, or is targeted at a specific symptom such as hyperactivity, it is probably an appropriate one.
4. What are the possible side effects?
Never accept “nothing serious” as the answer to the above question. What might not appear serious or significant to a professional may be important for your child and family. For instance, a physician may not consider mild sedation in the afternoon a problem, but it may be your child’s best time of the day, when he his relaxed and receptive to learning. No matter how trivial a side effect, it is alarming when it does occur and it is better to be well prepared.
5. Should you enroll your child in a trial?
There is no harm in enrolling your child in a trial but it should be a scientifically conducted trial. Participating in a trial does not imply that someone is allowed to treat your child as a ‘guinea pig’ or an experiment. In fact, it is far better to participate in a scientifically conducted trial that could potentially benefit your child as well as several other children, than to give your child a medication which is not scientifically proven to be effective and might even harm them.
6. What kind of financial and time commitment does the treatment involve?
A treatment that is a big financial drain on the family, or involves the parent spending 10 hours a day working with the child, is obviously unsustainable. Other factors also need to be considered – if the treatment involves a huge time commitment on the part of the child, does this mean discontinuing their current school program that is of obvious benefit? Above all, remember that you know your child and family the best, and this makes you the best person to make decisions regarding your child’s treatment. Becoming well informed, and asking the above question only helps to make you confident and makes the decision process easier.