Wednesday, April 1, 2009

#6 Do you tell people about your child's diagnosis?

Please share your thoughts and feelings about telling versus not telling. Whom do you tell...everyone you meet or only very close friends and family? The swim coach and the Sunday school teacher? The person who's staring at your daughter or son at the grocery store? Obviously, the severity of your child's symptoms will weigh heavily in this decision, but what other factors influence your decision to tell or not tell particular people?

HERE is an essay I wrote about our approach to this subject.


tinamarie said...

We tell people that need to know. Our families knew from the beginning. We do tell teachers and talk to them aobut Tony's needs and anything else that should be aware of.
Some friends know. We don't tell everyone though. We don't want Ton'ys friends or their parents to freak out because they don't understand it.

Anonymous said...

We told our family & close friends at first I didn't want to tell people but why hide it. We now tell her dance teachers & gymnastics coach. Our other children know so if a child or person is staring at Corina our daughter will usually try to explain why she is doing what shes doing. We are very open & honest about it. My seven year old probaly knows more than the typical adult when it comes to Autism.

Anonymous said...

Having the pediatrician suggest that your child is likely autistic, and leaving that shocking meeting with a referral for assessment, and not being hooked up with some sort of support group to muddle through the news started us off on a weird footing. Initially my husband and I thought we would keep this to ourselves out of fear of our son being judged by this 'maybe' label. As our son began seeing a variety of therapists and having a variety of scheduled appointments I needed childcare for my younger son. I also found the therapies to be a steep curve for me and so found myself discussing (or wanting to discuss) the impact of maybe-autism in our lives. We have decided to share with close friends, immediate family, and any teacher/helper in our son's life as it seems only fair to him that the teacher knows that he's not a brat but working through some stuff. As with most things of a delicate nature, there are people who we were open with who we shouldn't have been. As for the ladies in the grocery store tsk tsk-ing me and my screaming child... it is so tempting to tattoo "autism" on his forehead, though they wouldn't get it anyway. Some people won't, or don't want to, and you need to know that ahead of time in the telling.

DebsStuff said...

We tell as many people as we feel need to know. All the neighbors are aware, all the teachers, daycare (people who he is in contact with on a regular basis) I feel their need to know is vital, espcially when it comes to safety concerns. I tell kids at his school he has autism if they ask me "what's wrong with him" They tend to be more understanding and nurturing with his unusual behaviors.

C said...

Wow! What a great site! I've just discovered you here and just had to answer this one right away. I'll go back and check out/answer the other questions when I have some more free time. I don't hesitate to tell people about my son's autism if the situation calls for it. I openly talk about it to him and in front of him. I do not want him to grow up feeling ashamed or devalued because of it, or to believe that his parents are ashamed of him either. Ironically, the people that I have received the worst reactions from when they were told are in my own family. My MIL refuses to even mention the word autism and will change the subject if I start to talk about his therapy in any way. My dad and step-mom are repeatedly telling me that there is nothing wrong with him and he seems fine. My mother chose to start treating him as if he didn't exist, barely acknowleging his presence.

At school, all of the staff and teachers know and they adore him (he's a great kid!). Then at the beginning of each school year (he's in 3rd), I read his class a book called Since We're Friends and then answer their questions (or my son does).

I figure society won't get any further away from stigmatizing our kids if I hide away and don't talk about it.