To Tell or Not to Tell?
My article last week, “To Diagnose or Not to Diagnose,” sparked many comments and discussions, both through email as well as on this blog. It seems that most of the people who contacted me agree that in a perfect world, a “diagnosis” would not be necessary, but instead, people’s needs would be met on an individual basis, and each person would be accepted and celebrated for who he or she is. We know that many factors contribute to our current inability to rely on a simple needs-drive-services model, and that the diagnosis is often both necessary and desirable for those who fit the criteria for an autism spectrum disorder (ASD).
Once our understanding of an individual leads to a diagnosis or points to the presence of ASD, often the on-going question becomes, “To Tell or not to Tell?” Who needs to know about the diagnosis? When does the individual himself or herself need to know?
The answer to this question is highly individual, and may change over time (perhaps again and again). Perhaps sharing some of my own story will help to provide some perspective on this issue.
My sons were each diagnosed at a very young age (3 and 2) with Asperger Syndrome. Both eventually ended up in regular classrooms, but with outside assistance (physical, occupational, and speech therapy, both privately and through the school system). When they were very young, their differences attracted attention. Classmates’ parents wondered why they flapped their hands during gym class, why my two-year-old was speaking in complete sentences and singing songs while his classmates were mostly non-verbal, why they had difficulty answering questions even though they were highly verbal, why they seemed awkward when running and climbing, and why they irritated classmates by closing doors that their peers wanted open, by sitting too close to other children on the story rug, or by repeatedly reminding the teacher that it was time to start a new activity. At that stage, providing information about my sons’ diagnosis enabled me to access support from other parents, provided direction and helpful strategies for the teachers and therapists working with my children, and created a more flexible and understanding environment for my everyone. Although it was not my intent, I was surprised to find that some other classmates were also diagnosed after I shared information about my children with parents and/or teachers!
As they got older, both my children and their classmates started noticing (and asking questions about) my sons’ notable strengths as well as some of their differences. At that point (in my case, at ages 8 and 5), I told my sons about their diagnosis, and eventually went into their classrooms to provide more information to their classmates. (I have written an article about how I shared the diagnosis with my sons, which is available on our Articles page at www.thegraycenter.org.) The benefits to providing information at this stage were many; classmates became more tolerant and supportive, the teachers were able to be open about everyone’s differences in the classroom, and my kids were able to discuss (with me and sometimes with others) some of the positives and negatives of their diagnosis and how it affects their lives. At this stage I regularly wrote letters to new teachers to introduce my children, including their strengths and challenges, and the unique attributes of the diagnosis that might affect their performance in the classroom. I also provided access to resources and to techniques that tended to work well with my kids.
Now (at ages 14 and 11), my sons are excelling independently in regular classrooms, without outside supports. They have chosen not to tell people about their diagnosis; a decision that I support. While the information is in their files, and is occasionally discussed as part of relevant discussions at parent-teacher conferences, most of their classmates and their parents probably are unaware of the presence of a diagnosis of any sort.
As my kids get older and move toward high school, college, employment, and dating relationships, I anticipate that it will increasingly be up to them to be responsible for their own success in each of these areas, and consequently, to determine whether people need to know about their diagnosis. (I am aware that adolescents and adults who do not function as independently may continue to need parents or other care givers to intervene and provide assistance in this area).
Although there is no one answer that can work for everyone with regard to this issue, there are perhaps some guidelines that can be helpful. Some are related to my recent articles about getting a diagnosis, and person-first language:
1. Who needs to know? Primarily, it is important that people have this information if it will create a more supportive environment for the individual in question, and better enable him or her to reach their full potential. If needs are not being met and the individual is misunderstood without knowledge of the diagnosis, this would be an important time to increase understanding about ASD and how it affects him or her (and the social environment, whether it is a classroom, playground, home, or workplace), as well as resources and strategies that could help.
2. Does the individual know about his or her own diagnosis? Often, a good time to provide this information to the individual is when he or she begins to question differences (why they go to therapy, why others don’t seem to want to play with them, why no one else knows the names of all the planets or the local train schedule, etc.) Be careful about setting up a situation where “everyone” knows about the diagnosis except the individual with the diagnosis!
3. How does the individual feel about the diagnosis? Although my children have chosen not to voluntarily disclose their diagnosis at this time, I know other individuals who are eager to share this information with others. Again, when needs are being met, it likely becomes more of a personal issue to be determined by the individual and his or her family.
4. Be sensitive to when and how the information is shared. If the individual is not aware of his or her diagnosis, or is not comfortable having it discussed in public, be sure to inform others only if necessary, and in a way that protects your own integrity and the thoughts and feelings of the person in question. In my family, the diagnosis has never been used as an excuse. It is sometimes an explanation for why some things are difficult (or easy), or why my sons need to work harder in some areas than others, but it doesn’t excuse negative choices that they make. It should also not be used as the source of blame for all the negatives in a person’s life. In the cases where this has happened, I’ve seen people who view their diagnosis very negatively, seeing it as the source of all the things they don’t like about themselves or their lives. (We can help to avoid a situation like this by watching our own attitudes that we portray toward the diagnosis and the individual with the diagnosis.)
Again, this is a highly individual topic. Everyone likely has his or her own guidelines for disclosing a diagnosis to other people. If you’d like to share information that might be helpful to others, feel free to do so here!
Thank you all for your continued work in promoting social understanding around the world!
Laurel Hoekman, Executive Director
The Gray Center for Social Learning and Understanding
www.thegraycenter.org
Note: I have written the booklet, “ASD to Z” as a means to educate others who need to know about ASD. It provides basic information, support, and hope for those who are looking for a “starting point” –or an easy-to-read resource—for learning more about autism spectrum disorders. The Gray Center is celebrating the fact that since this resource was published, we have given away or sold more than 10,000 copies! If you would like a copy, you can purchase one at a reduced rate of only $2.00 this week at www.thegraycenter.org. This would be a great time to stock up on booklets to give to teachers and other family members! We also have numerous other resources for sharing the diagnosis with an individual on the spectrum.
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