Before disclosing a diagnosis to relatives, such as grandparents, determine whether they are likely to be supportive and tolerant of a range of learning disabilities and other possible health and behavior problems. It is reasonable to wait with a prenatal diagnosis until some developmental delay presents, and an explanation to grandparents or to siblings is necessary. A significant factor in disclosure is the need for social benefits and supports. Most accommodations of any type have their basis in the American’s with Disabilities Act. The individual with XXY may not be disabled and yet still qualify for services and accommodations. For example, an XXY may benefit from the protections and supports afforded by an IEP or 504 plan in school. In the case of a child with language, physical, learning or behavioral difficulties, disclosing the chromosomal condition to relatives is often reasonable and reassuring to them. It is important to know as much information as possible so that you can address concerns, particularly where the relative has heard one of the myths about 47,XXY. Some of the myths about 47,XXY are that XXY causes intellectual and developmental disabilities (previously called mental retardation), increased criminal behavior, or that individuals with 47,XXY are actually women.
It is important to emphasize that most XXYs have IQs between 85 and 120 although some individuals with more than two additional chromosomes may have intellectual and developmental disabilities. In addition, XXYs as a group actually have lower than expected rates of criminal convictions, when compared with the general population of males. And, while respecting those XXYs who identify as a different gender, the presence of a Y chromosome almost always determines that a human develops as a male, although there are some syndromes (not related to 47,XXY) where a human with a Y chromosome may develop as a female, rather than as a male. As mentioned previously, a minority of XXYs identify as another gender or intersex.
Disclosure to an employer is rarely necessary unless the employee is seeking employment through a supported work program or is seeking some other special accommodations under the ADA. Genetic information should remain private because disclosing such information may make obtaining health or life insurance difficult. Employers or others may make unjustified assumptions that certain myths (cited above) are true for persons with 47,XXY. In some cases, however, it may be necessary in order to obtain Federally-mandated Family and Medical Leave, or some other benefit such as disability coverage or an accommodation under the Americans with Disabilities Act (ADA).
Disclosure to the school is only necessary if there are significant learning or behavior problems that require special education classification, such as an IEP or Section 504 accommodation. Schools will often be unaware of the condition, and staff will need to be educated about XXY, usually by the parent. Bring a selection of website printouts explaining the condition and its impact on learning. Some parents have found that special education services are more likely to be appropriate when the pediatrician provides a diagnosis under the classification of “other health impaired” such as Pervasive Developmental Disorder-NOS (PDD), rather than 47,XXY. Schools understand autistic-like behavioral and language difficulties when they occur in high-functioning children and many schools have programs in place to address these problems. In addition, these programs are mandated in many states for children with autism spectrum disorders of which PDD is one. The schools may not realize that XXY children often have the same deficits and are also eligible for these services.
To access these accommodations, parents are well advised to learn the glossary of key terminology that “pushes all the right buttons” that qualify the student for these supports. It also may be helpful to recruit local disabilities advocates such as the ARC to assist with the qualification process.
Individuals with 47,XXY fall in love just as other human beings do, and the condition, as any other medical condition, should be discussed at the appropriate time, without obligation to divulge all early in a relationship. If and as a relationship becomes “serious,” disclosure that is accompanied by a thorough education about the condition should take place. Support groups and list-serves can introduce couples to others who have been through building a relationship and a family; this is an occasion on which support from others in the same situation can be very helpful.