How Did You Decide How/when/if To Share With Family And Community That Your Child Was On The Spectrum? Does It Make Things Better Or Worse? | MyAutismTeam

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How Did You Decide How/when/if To Share With Family And Community That Your Child Was On The Spectrum? Does It Make Things Better Or Worse?
A MyAutismTeam Member asked a question πŸ’­

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Right now only immediate family and my daughter's preschool know about her diagnosis (bc we requested her ABA therapist be with her to keep her on track). I struggle with when/how/if to tell friends and community members that she has an ASD diagnosis because she seems to be fairly high-functioning as of now. Part of me… read more

posted February 7, 2014 (edited)
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A MyAutismTeam Member

I have aspergers and I can tell you this.

I was diagnosed late (my freshman year of high school). It was hard to be labeled becuase rather than it helping me it was used against me. I fought to stay at the school I was at (a college prep rigorous school) because I was afraid of change and did not want to go start over (for a 3rd time). When I was younger than that though I had a hard time socially and just being like socially appropriate but I learned ways to deal with it. I still had friends and people i could talk to but no one that I had a really good relationship with.

Being a parent can be frustrating and so hard emotionally and you can feel like a disappointment, BUT DON'T. you can do so many things.

Sports. Put her into sports. This will help a lot with moter skills and social skills. Later on in life this will be something that helps her a lot.

Find what she's good at and pursue it. If she has an interest such as building, it won't be a phase, it will continue. As she gets older and her desires become more evident, pursue those things. She will excell. I am an extremely pattern oriented thinker, I failed Alg. 1 twice and struggled through geometry. but I did it. I found what helped me and went for it.

Don't let the label ruin her self esteem. Don't tell her until you think she's ready. When you tell others, tell them with confidence, tell them what she's good at, becuase chances are shes better than they are at it. When she gets older and accomplishes things, which will happen, she can say that she has aspergers and it will encourage others. I babysit i work with special needs children I do sports, I do tech I maintained a 3.4GPA last year. Affirm her in what she does right, be patient when she does wrong, and let her know that you love her. Get her a tutor right when she starts to struggle in school. And keep her with other people. They don't need to know that she has a label. Its a way of thinking, not a way of life.

posted February 8, 2014
A MyAutismTeam Member

We told all of the family and our friends, and some of them are good with it, but the rest who do not really agree we just limit interactions with. the schools and doctors know of course because they have to provide services. Other than that we only tell others if we have to, and most of the time that is because we are explaining behavior. We do not worry about what others think, and to be honest do not care anymore it just is not worth the aggravation anymore.

posted February 8, 2014
A MyAutismTeam Member

I haven't shared much with my extended family. I don't think they have much knowledge about it and will just judge him.

posted February 7, 2014
A MyAutismTeam Member

I think you need to inform those who directly care for your child but I have needed to tell people to help explain my childs behaviour and also to advocate for him so that his needs are met. I had to tell a parent when sending him to a birthday party. She needed to know that balloons caused high anxiety with my son. Also informed her of some behaviours to expect and how to handle them.

posted February 8, 2014
A MyAutismTeam Member

Those who need to know were told about my daughter's ASD. A 3 year-old acting up doesn't stick that much but she does when she's the kid who doesn't like to sit down much and won't nap or eat with noisy kids in a cafeteria. Caregivers need to know and especially if she's the only autistic kid in the daycare. I hate the labeling but my relatives need to know why she's bent on touching stuff or breaking objects. My none of my family had to deal with what we've gone through and the fun is only beginning for us. My boss was told because the sleep deprivation was turning me into the walking dead. The days when we locked up the "crazy" family members in the attic or shuffled them off to institutions is over. I'd rather her go out in semi-controlled environments and risk the possibility of getting some unwanted attention than have her living in a bubble at home. I hope we can curb some of her behaviors and have her experience the world which is important if your kid has sensory issues. I don't push my kid into situations to piss off others but at the same time I hope people will cut us some slack. I've never had the urge put other kids or their parents on the spot because I'm laid back and non-confrontational. I figure at least I don't have to deal their problem child.

posted February 7, 2014

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