Day 28: Should we tell people about our child’s diagnoses?

When you meet new friends, do you immediately tell them that your child has autism? 

Do you wait a while? 

Do you only tell them on a need-to-know basis? 

Or not at all?

When I used to tell people, my experiences left me angry and frustrated. I had hoped that by telling people, they would understand her behaviors and be more empathetic when making judgments about her. But I found the opposite. 

One daycare suddenly had no openings after giving me a tour the moment I said the word “autism.”

A parent came to my child’s birthday party just to yell at me. To make sure she could confront me on her feelings that my monster should not be in a school with her child. 

People have said things to me like, “Don’t they have a special needs class?” When I explained her behavior. 

“Autism is no excuse to act like that.”

I often found that telling people divided us. 

I’ve had people that barely know my child argue with me that she doesn’t have it. Because she doesn’t look autistic. 

Or that there is an over-diagnosed conspiracy going on in NJ. 

And I’m not going to waste my time trying to educate people who know everything. 

People who don’t understand that no parent wants to be here dealing with this. 

As of now, I only tell people on a need-to-know basis. But I am second guessing this decision as well. 

I am in no way ashamed or embarrassed by my child’s diagnoses, I’m protective of her privacy. Why should every family in our neighborhood know her diagnoses? So that her classmates can all know it as well?

There is a stigma that comes with “autism.” 

2016, 2 years old

We didn’t even classify her under Autism on her IEP because of it. 

Her teacher even pointed out that a general education teacher may see “autism” and automatically argue that her placement is wrong or compare her to other kids that have influenced their perception of the diagnoses. 

Many people have negative associations with autism. They will jump straight to treating her like Frankenstein during her first meltdown and see through her abilities. 

She probably has the highest IQ in her class and it won’t matter. 

Her bus aide has told me about five times this year that my daughter is a brat. Mind you, she is on a bus with most other children with special needs and a few preschoolers from the inclusion program. She is a woman past retirement age who probably doesn’t have the patience for children like mine and I have let her comments slide all year. Her perception of Ally is already set. 

It doesn’t matter if I tell people or not. The more time you spend with either one of our children, you notice a difference. That’s what my husband said to me tonight, that people will figure it out sooner or later. 

Whether people figure it out or I tell them, their overall reaction is going to be the same. 

I should probably go back to telling everyone all of the time so we can see how they respond from the beginning.

If they are going to bail, I’d rather they bail from the day we first meet than to do so after we have become friends or our children become friends. I think I have seen the absolute worst sides of people along this journey and I’m prepared to just walk away. 

My only struggle with this is that I don’t feel like every kid in her class or in the neighborhood should know my child’s medical history. 

We have our hands full as it is and to deal with nasty kids down the road is going to hurt our child even more. 

(And yes, I write about it on here but I don’t publish our last names or the town we live in. I’ll probably have to unpublish my blog down the road and am prepared to do so.)

Maybe I’ll start telling people more openly. Maybe I won’t. I guess I will try to consider it on a case to case basis. 

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One thought on “Day 28: Should we tell people about our child’s diagnoses?

  1. This is off-topic and maybe you already know what I just discovered this weekend. Many movie theaters offer a low-sensory movie experience, usually pretty early in the day. They lower the sound and raise the lights. Walking around, talking, shouting noises, rocking, not watching the movie, spilling popcorn and so on are all accepted behaviors.
    Your daughter might have some fun and you might meet other parents and find things in common.

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