How do you refer to you Autistic child?

Danielle - posted on 12/27/2011 ( 3 moms have responded )

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Hello ladies,
I am just wondering how you inform people that your child is Autistic?
Does your child know they are Autistic? What have you told your child when they ask why they are different?

I was talking with a relative, and they believe that I shouldn't tell people that my son is Autistic because it will give him a label, and may further give him the leverage to use it as an excuse when he is older..
Ex) My cousins teen will completely act out, (he had A.D.D), and will say "It's not my fault. I am not on my meds."
She thinks that by giving him the label, he will be restricted by his expectation as an Autistic person, and will not have the confidence to accept that he is capable of achievement, with or without a label.

My toddler is three years old, and I feel like I need to give people some explanation when he has major meltdowns over the smallest things. He whines a lot because he is non verbal, and I think it puts strangers in an awkward position.
So far I have told people that he is "sensitive", but I feel like that doesn't sum it up properly.

Today I had a friend over that I haven't seen in a while, and while my toddler was overly stressed and sensitive to the fact that a stranger was in the house, I tried to explain to her that he shows many signs of Autism, and we are in the process of getting him diagnosed.
I had a hard time saying the word "Autistic" out loud.

Does it get easier with time? How do you work a conversation into explaining? Do you ever get the feeling like people don't believe you?

Thanks so much in advance.

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Marianne - posted on 12/27/2011

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My son didn't talk either for a long time. At 25 months he had to have a surgery in his mouth to help him have more functionabilty w/ his tongue (they clipped his little flap thing under his tongue). The ENT physician told me to stop using sign language w/ him so he would have to try and use words. By 30 months he still wasn't talking and was displaying some very odd behaviors. He had two cracker boxes, one yellow and one blue, that he would move from the table to the floor and back (in the same color pattern) for over 45 minutes, and if one didn't stay standing up just right he would throw a huge fit, scream and cry and throw or kick the box, calm down and start over. Every time he passed by a door handle, he had to touch it. he would sit and stand 3 times before finally sitting down. He was a biter when he was angry. he would bang his head on the wall when he was angry. he preferred to sleep in the cubby underneath the enetertainment center during nap time. he would not potty train either (finally got that far when he was 4 and 1/2) I finally had him tested for autism, but they said while he did show certain signs, they couldn't make an actual diagnosis at such a young age. He finally started talking at about 36 months. And as he began to communicate better, his odd behaviors started going away. He is 6 now (almost 7) and is still a tad behind other kids his age in the speech department, but is pretty much a normal kid and smart as a whip. :) He was re-tested for autism at 5 and he showed no signs at all.

I didn't explain anything to people unless they needed to know (relatives, teachers, doctors and so on). Your special boy is who he is and you shouldn't have to make up excuses or give explanations. As long as you, your family and your son find things that work and make life managable then to hell w/ people and their judgements. Only talk about it w/ people you feel comfortable with. Good luck :)

Katherine - posted on 12/27/2011

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Well it's not really a label, it's a disease. There is no cure. And I don't think you should necessarily have to apologize for his behavior. He has a meltdown, "My son is autistic, or we're getting him evaluated for autism." Or like you say he is just sensitive.

You have to have that "label" to get him the right help in school and other places. To start ABA and EIP. To get TA's and special help in school.

Don't feel like you even HAVE to explain yourself unless you are comfortable with doing so. If someone doesn't believe you, I'm sorry but screw them.

You could simply say, "He's autistic." Don't ever feel like you have to explain yourself, he hasn't learned to control his meltdowns yet.

As for your son with ADD, if he doesn't take his meds, that's on him. Then he has no excuse. He knows he has to take them. Totally different scenario.

Hang in there. There is and autism group here. I will send you the link.

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