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Do you think you should be careful?

Posted by on Jul. 24, 2013 at 12:11 PM
  • 16 Replies

This past weekend we visited my parents. I had already told my mom over the phone my dd's dx but this was the first time we could talk to them in person about it.

We kinda skated around it, with me just talking about therapies and options and not really talking about where she is right now or how this affects our family.

Well, Sunday morning me and my mom were cooking in the kitchen. My mom has accepted the dx but just keeps saying "but everything is going to be ok." Yes, I do believe my daughter will talk and socialize and hopefully one day become an independent woman BUT it's going to take a lot of work on my part to ensure that happens. My mom is acting like I could treat her like any other kid and she'd still be fine. So, I was saying something and I finally said the word autism. And my mom bristled and said "you need to be careful about telling people she has autism, because when people hear the word autism they only think one thing .... they think about those people that rock violently and hit their heads!"

I just said that there is so much more to autism than that and the definition is much broader. I didn't get angry at her or yell at her or say that it's people that think that way that need to be careful, not the people talking about their children. I was honestly too confused to appropriately answer her.

What would you say to people who thought this? Especially family members. It's like my mom accepts my daughter only because she's not severely impaired. And it just reminded me of what she said the first time I told her the ped wanted my daughter tested for developmental disorders. She said "as long as nothing's wrong with her little brain, it'll be ok."

by on Jul. 24, 2013 at 12:11 PM
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Replies (1-10):
JTMOM422
by Platinum Member on Jul. 24, 2013 at 12:19 PM
4 moms liked this

I would tell them that autism is a spectrum disorder. That no 2 kids who have it are the same. That the  media has a way of signaling out certain people with ASD and showing them. These are usually the ones that are the most severe.  That they don't speak about the greats such as Albert Einstein or Beethoven. Because good news doesn't sell. I would let them know that your child can still do anything that other children may do but your child may do it differently. Different is what makes this world great. Why would you want to be like everyone else. I would also recommend a book called Carly's Voice for your mom to read. 

Jenn8604
by on Jul. 24, 2013 at 12:22 PM
I like how you worded this. I agree whole heartedly.

Quoting JTMOM422:

I would tell them that autism is a spectrum disorder. That no 2 kids who have it are the same. That the  media has a way of signaling out certain people with ASD and showing them. These are usually the ones that are the most severe.  That they don't speak about the greats such as Albert Einstein or Beethoven. Because good news doesn't sell. I would let them know that your child can still do anything that other children may do but your child may do it differently. Different is what makes this world great. Why would you want to be like everyone else. I would also recommend a book called Carly's Voice for your mom to read. 

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JTMOM422
by Platinum Member on Jul. 24, 2013 at 12:28 PM
1 mom liked this

Thank you. I just finished Carly's Voice and she is my inspiration now. She has succeeded when others thought she would fail. Between her parents and therapist it wasn't about what she couldn't do but about how to help her do it. Great Book!!

Quoting Jenn8604:

I like how you worded this. I agree whole heartedly.

Quoting JTMOM422:

I would tell them that autism is a spectrum disorder. That no 2 kids who have it are the same. That the  media has a way of signaling out certain people with ASD and showing them. These are usually the ones that are the most severe.  That they don't speak about the greats such as Albert Einstein or Beethoven. Because good news doesn't sell. I would let them know that your child can still do anything that other children may do but your child may do it differently. Different is what makes this world great. Why would you want to be like everyone else. I would also recommend a book called Carly's Voice for your mom to read. 


Jenn8604
by on Jul. 24, 2013 at 12:32 PM
I will have to find it. Hopefully it's at the library.

Quoting JTMOM422:

Thank you. I just finished Carly's Voice and she is my inspiration now. She has succeeded when others thought she would fail. Between her parents and therapist it wasn't about what she couldn't do but about how to help her do it. Great Book!!

Quoting Jenn8604:

I like how you worded this. I agree whole heartedly.



Quoting JTMOM422:

I would tell them that autism is a spectrum disorder. That no 2 kids who have it are the same. That the  media has a way of signaling out certain people with ASD and showing them. These are usually the ones that are the most severe.  That they don't speak about the greats such as Albert Einstein or Beethoven. Because good news doesn't sell. I would let them know that your child can still do anything that other children may do but your child may do it differently. Different is what makes this world great. Why would you want to be like everyone else. I would also recommend a book called Carly's Voice for your mom to read. 


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conejoazul
by on Jul. 24, 2013 at 2:21 PM
I would great it the same as any other topic where it is obvious that the other person has had little direct experience/ contact with the subject.

Even though it is family and you want to be civil some people are currently living with ill-informed understandings of autism simply because they haven't known enough people with the DX. As others see persons who they know have autism living with their different strengths and challenges, it will be less common to encounter such reactions.
KatyTylersMom
by on Jul. 24, 2013 at 2:26 PM

Our parents have had a very hard time accepting the autism diagnosis as well - not so much because they don't see the struggles my kids have but because they want SO DESPERATELY for the kids to be ok one day, and with autism they know there are no cures, no guarantees, and often no guidance from the medical community.  And they're also probably aware of how little THEY knew about autism prior to your kid's diagnosis and what THEY thought of autistic people before they knew one and they think others will think that same way and be just as unaware and uneducated.  And sadly, they're only half wrong:)

SnowWhieQueen
by Member on Jul. 24, 2013 at 2:55 PM

that is so well put!!

Quoting JTMOM422:

I would tell them that autism is a spectrum disorder. That no 2 kids who have it are the same. That the  media has a way of signaling out certain people with ASD and showing them. These are usually the ones that are the most severe.  That they don't speak about the greats such as Albert Einstein or Beethoven. Because good news doesn't sell. I would let them know that your child can still do anything that other children may do but your child may do it differently. Different is what makes this world great. Why would you want to be like everyone else. I would also recommend a book called Carly's Voice for your mom to read. 


JTMOM422
by Platinum Member on Jul. 24, 2013 at 2:59 PM

Thank you 

Quoting SnowWhieQueen:

that is so well put!!

Quoting JTMOM422:

I would tell them that autism is a spectrum disorder. That no 2 kids who have it are the same. That the  media has a way of signaling out certain people with ASD and showing them. These are usually the ones that are the most severe.  That they don't speak about the greats such as Albert Einstein or Beethoven. Because good news doesn't sell. I would let them know that your child can still do anything that other children may do but your child may do it differently. Different is what makes this world great. Why would you want to be like everyone else. I would also recommend a book called Carly's Voice for your mom to read. 



kajira
by Emma on Jul. 24, 2013 at 3:45 PM

I hate to say this, but your mom is right..... and this is why my mom in law had a similar reaction when my son was diagnosed - me apparently, it was obvious to her *I* was autistic. Guess she's seen me rock. :P

I would be careful who I told - but I also would add a "If you don't know much about it, lets talk, because there's a lot of myths and I'd rather you know what it looks like for her to be autistic so you can understand my child better."

Or some variation of that.

And honestly - as offensive as this might be, we ARE impaired... we have difficulities with language, social behaviors, communication, body language and while we can learn to mimic - it never really comes naturally to us. We have to be taught what to say, and when to say it, and then have to try to fake those behaviors and social norms. we are *always* autistic - even if we learn to fake it well.

And - it takes it's toll on us emotionally and mentally to pretend and fake all the time.

You're mom if she really wants to support your daughter, need to understand how pretending to be normal and fake social behaviors causes a lot of mental over-stimulation after a period of time of trying to keep up with everyone else.

I'm an adult with autism who's married and have kids - it works because I have a supportive partner who doesn't mind my quirks, and works with me, instead of expecting me to be a normal person who can perform like an average non ASD person.

You're daughter could have a totally normal, happy life - but she may also need one that has some accomodations in it from partners, or family members in order to thrive.

Living and struggling to fake normal isn't good enough - Thriving is better, and sometimes, that means accepting ASD as a part of your wiring and working *with* it - instead of thinking it goes away as you get older.

emarin77
by Gold Member on Jul. 24, 2013 at 5:52 PM

That is very sad what she said and needs to be educated what Autism really is. 

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