Most of us like to make decisions for ourselves: what we will have for breakfast or what we will wear today. That is what autonomy is about. It is allowing people, where possible, to make their own decisions about their life and any medical treatment. People with FXS have the same rights to autonomy as anyone else, but it is not always straightforward. It is helpful to distinguish between children and adults.
Children
In many countries you are a child until you reach the age of 18, but some countries use the age of 16 or even 14. As a matter of law, in most countries a parent can make a decision on a child’s behalf until they reach adulthood, for example until they are 18. This is true for children with FXS as it is for anyone else. This means that if a child with FXS visits a doctor, the doctor will ask for parental consent before undertaking any procedures. However, it is good practice for the doctor to discuss the issue with the child and, depending on their age, check that they agree with the procedures. If the child does not agree, the doctor will need to decide whether the benefit of the treatment outweighs any distress to the child.
Some countries allow a child who has the level of maturity and understanding of an adult to consent to medical treatment for themselves, without involving a parent. However, not all countries allow this and still require the consent of a parent.
Adults
Generally, once someone has reached adulthood (normally age 18) they can make decisions for themselves about medical treatment, where they live, who they meet, etc. However, that is only true where they have “legal capacity”. “Legal capacity” means the person has the understanding necessary to make the decision. The precise rules vary between countries, but generally this involves asking whether a person (1) understands the relevant information and (2) can use the information to make a decision.
Generally the bar for capacity is set low. This means that a person only needs to understand the key facts about a decision and does not need to understand all the details. So, to take a pill, it might be enough to know that they need to swallow the pill and that this will make them feel better. They do not need to understand the nature of the chemical compound.
Most countries respect a person’s autonomy even if their decision is seen as a foolish one. We have the right to make mistakes! So, if you are concerned that an adult with FXS is making a bad decision and wish to intervene, you would need to show that they lacked the capacity (that is, they did not understand what they were doing). It would not be enough just to show they were going to harm themselves by the decision. This can be very difficult for family members if they think the person with FXS is making a bad decision. The law may allow them to do so, unless it can be shown they do not understand what they are doing.
Most countries use an “issue specific” approach to capacity. That means that even if a person does not have the understanding to make a complex decision they may still have the right to make simple decisions. For example, a person with FXS may lack the capacity to make a will, but may well have capacity to decide to wear a green top.
If a person with FXS does lack capacity, then decisions need to be made on their behalf. There is quite a variation between different countries in this circumstance. In some countries it is possible to appoint a Guardian to make decisions on their behalf. Often this is a parent, but this could be a sibling or other carer. Other countries allow professionals to make decisions on behalf of the person lacking capacity, in consultation with the family. If someone with FXS is approaching adulthood and they may not be able to make some decisions it would be a good idea to get some legal advice as to whether a Guardianship should be made or what legal rules will apply.
Please also see our sections on vulnerability and consent, sexuality and relationships.
