Parents: Don’t Be So Afraid of the Autism Diagnosis
October 2, 2014
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Now Reading: Parents: Don’t Be So Afraid of the Autism Diagnosis
October 2, 2014
(originally written & published on October 2, 2014)
Ok, so I know I wrote in a post last month that new autism parents shouldn’t read my blog, but this post is an exception.
The idea for this post came from me reading this great blog post from an autism mom called “WE DIDN’T LISTEN… AND THAT HAS MADE ALL THE DIFFERENCE.”
In it, the mom deservedly pats her & her husband on the back for knowing something wasn’t right with their daughter at a very early age, and fighting to get her evaluated and sticking to her guns and not listening while every one was telling her…..
“She’ll be fine”, “What are you so worried about?”, “My friend’s kid didn’t talk till he was 4″, “She seems normal to me”, “You’re being paranoid”, “Don’t worry, just give her time”
And she got her daughter into therapy at 15 months, diagnosed on the spectrum at 21 months and 11 months in to the journey she wrote…
“Early intervention completely changed the trajectory of her brain and social development. I cannot say enough about Early Intervention and how important it is. My only regret is that we didn’t know more and start prior to 12 months of age. If you KNOW in your gut that there is something different going on with your child – please listen to that voice. Don’t give up no matter what. It could very well mean all the difference for them and their future.”
And she is absolutely correct. Early intervention is vitally important and all the experts tell you the earlier the better…Which makes me wonder, why do friends, family, co-workers very often tell us “give him time, he’ll be fine”?I know they are trying to make us feel better, but why not say
“it’s probably nothing, but get him evaluated just to put your mind at ease”
If they are correct, if it ends up being fine and your kid is fine, what’s the worst thing that can happen? You get your kid evaluated and a week later they tell you he’s fine.
And if he’s not fine? Then when your kid is young and you’re in the Early Intervention years you can get a TON of services.
What are we all so afraid of? An autism diagnosis? The stigma of an autism diagnosis? I don’t get it. I wrote this in a previous blog post when some one asked me how I accepted my son’s diagnosis.
“I accepted the diagnosis back then because it made sense and because it came with the amazing women who enter your home when you enter the Early Intervention program Was I thrilled about the diagnosis? No, of course not! My freaking kid had autism!! I’m pissed at it still. (if you’ve been reading my stuff long enough you’ll know that)
But why wouldn’t I accept it? People come in, evaluate your kid, tell you that he might be autistic, and then offer to give you lots of services so that your kid can one day function better, be less autistic, whatever. Why wouldn’t I accept that? Accept that help?
I’ve run across a few people who turned down services because they didn’t want the stigma of a diagnosis, or other people who the “experts” recommended that their kids “were low toned” or “slightly speech delayed” and could benefit from some speech, or OT, or PT. and these people turned them down. “My kids don’t need that?”.
Maybe they don’t but this is part of what your taxes are paying for! Why wouldn’t you take a nice woman coming into your house to play with your 2 year old for 45 minutes a day?! And help them progress!
So yes, I accepted the diagnosis with no problems whatsoever.”
Is there a huge stigma to your kid having an autism diagnosis that I’m not aware of? Maybe in the aspie world?
And even if your kid is godforbid misdiagnosed. Maybe he appears to have autism, and scored high on the autism check list when he was 2 years old, but maybe he was just a late bloomer like grandma always said.
Well if that was your kid, did the 3 hours of speech therapy and 2 hours of OT a week that Early Intervention gave him hurt him?? No, even if he wasn’t autistic it probably helped him immensely.
And trust me, if you’re kid is given an autism diagnosis at the age of 3, I’m pretty sure it doesn’t go on his “permanent record”. Trust me when he hits kindergarten or 1st grade age if he doesn’t seem autistic anymore the school district will try to de-classify him faster than you can imagine. Why? So they don’t have to pay for the additional services (speech, ot, pt, aide, etc.) than. If he’s not autistic, trust me he will lose that classification.
And you may find yourself fighting your school district to keep the autism on his school records because he could still use a little extra OT or Speech.
That’s all I really got to say on this one. If you’ve read my blog for awhile now you’ll know that Early Intervention didn’t necessarily help my son all that much. But he is a rare case, he went from mild autism to severe.
But I agree with all the experts. And I can’t stress enough the huge benefits of early diagnosis and early intervention and getting your kid the services he needs ASAP. So if you’re thinking your kid is showing some signs of autism, ignore Great Aunt Alice who remembers that Aunt Linda didn’t talk til she was 5 and get your kid evaluated.
TODAY IS THE DAY! MAKE THE CALL!
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).