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Parents: Don’t Be So Afraid of the Autism Diagnosis

Parents: Don't Be So Afraid of the Autism Diagnosis

(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.


Written by

Frank 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” :-).

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19 People Replies to “Parents: Don’t Be So Afraid of the Autism Diagnosis”

  1. Good point! There is absolutely nothing to fear about getting an early evaluation for your child, on whether or not he or she has autism. If your concern is real, and there is an official diagnosis, then all the more better. In that regard, you are given the chance to take two steps ahead the disorder. Thank you for raising those points! I hope to read more from you. Kudos and all the best! 🙂

    Sabrina Craig @ Medical Attorney NY

  2. Anonymous

    Of course the most logical and beneficial thing would be to drop the denial and embrace that you need services.
    However, just like with any diagnosis, people still cling to denial thinking that protects them somehow. It's illogical and harmful… but human nature and occurs with all diagnosis– cancer, heart problems, etc.– across the board. I don't think it is 100% about avoiding stigma from an autism diagnosis… just like you may deny a lump in your breast wouldn't be b/c you don't want the stigma of being a breast cancer patient.
    It's FEAR… of our own mortality… run amok.

  3. Anonymous

    Great read. I am from New Zealand, and it seems here they try to hold off a diagnoses which is so frustrating … what's the point of early intevention when the Dr refuses to do anything about your concerns when really a simple referral to a specialist would have been so helpful 4years ago. Son had sensory test done at age four because I changed drs and he came up as being severe in all 7 senses. Then at age five came the ASD diagnosis. I get mad wishing all this was sorted years ago.

  4. Dylan

    People are indeed afraid of the stigma.I know a family with a child with Down Syndrome who refuses to get any help(and they are rich, they could afford the best therapies) and whenever the doctor tries to bring it up they say: There's NOTHING wrong with our child.

    I'm not going to lie to you, when I watched the video of you reading to Kyle I panicked a bit.I had an actual moment of panick: What if my child will be autistic? This severely autistic? (I don't have any kids yet, I freaked out about a hypothetical kid mind you).I realized quickly that I would just deal with it, just like you do, just like every other parent out there deals with it.They'll be my kid no matter what and I'll love them all the same, whether they're a typical child or a child with special needs. I finally understand why the "I don't know how you do it" comment is annoying.You just do it, what other choice is there?

    I guess in a way I can understand that the parents see something is not quite right with their kid but are afraid to find out what it is exactly. But I agree with you, early intervention is important and it is harmful to the child to not have them diagnosed as early as possible.

  5. Anonymous

    Another little story. After being kicked out of 4 pre schools in 6 months, I finally got a diagnosis of ADHD for my kiddo. I had to really stick to my guns about Aspbergers. Now, at age 6, he is ADHD and Asp. but getting absoultly no help from the schools. "We are dealing with behavior issues". They do not understand the Autism world for shit. "we will reward him with I-pad time if he behaves all day". Seriously? all day? in his world, all day is a year! Trying to figure out if taking him out of public school will help, or is social skills so important? He is pretty much a loner and only plays on the playground around kids, not with them. ugh, now I have a headache…….

  6. says the blogger who thinks autism should be cured. THAT is fear in my book

    1. Don't be too hard on him he just doesn't understand that there's nothing wrong with his son. The only problem is the society he perpetuates.

  7. Anonymous

    Yes, thank you for this space for us desperately needing understanding. My son, who is 10 now, began being "difficult" when he was 7. and really never liked too much attention from people (apart from us parents and close family). We started then asking for help, and you know what? The so called professionals did nothing to help. We had Educational Psychologist coming who spoke to us parents, but never met our son at school and then he decided after calling the school that our son does not need his involvement! We went to see the pediatric and she asked if he played with cars wheels, or put cars in lines or perhaps had an obsessive interest in something. No, he did not! He is a very brigt boy, he speaks and can do almost anything, but when it comes to behaviour…….. and would not talk about what is wrong. In the last three years we moved schools few times as they could not meet the needs of my child, we were facing permanent exclusion .We were referred to CAMHS and they decided that they have not enough evidence to work with the child ( who gave them qualifications to be psychologists od psychiatrists if they do not know how to work with the child who does not engage?). Recently we managed to get the SEN statement but still no diagnosis. I am exhausted, discouraged and do not trust in competence of those who call themselves professionals and just tick their boxes to get money for doing nothing. Therefore I am not going to give up, he is worth all my time and effort!!!

  8. A comprehensive diagnose is must for treating the Autism. Every autism case is unique. I have heard a lot about chiropractic treatment for Autism. The reviwes of the same are also good.

  9. Very true. Early diagnosis of autism can really help a child to recover quicker. I have heard about some cases in which early intervention has brought better results leading to a satisfactory recovery.

  10. thank you for doing this as an Early Childhood Educator your blog helps me to better understand the parents perspective

  11. I'm speaking from aspie world, as the post called it and here's my story's start, as far as that goes. When I was four I was diagnosed mildly autistic, which became Asperger's. I went to a center 1.5-2 hours from home for one of these diagnoses and I think the other was from a local psychologist. I remember the center had toys and a gym, where my mom says I rode a trike. My mom said she felt like someone stuck a fork in her insides when she was told about my diagnosis. This was 1994, so 20 years ago. I'm 24, 25 in a month now. Sometimes, I tell people mildly autistic or high functioning, if it's relevant, so they'll understand. Like this rec group for the disabled I'm in. Another member of the group knows about Asperger's, so when I used my mildly autistic explanation, she mentioned the Asperger's end (of the spectrum) which I confirmed.

  12. Anonymous

    we were told at he was just 2 again at 3 he was just 3 at 4.5 u have a really bad case of adhd i contuied to ? them over the year till finally at about 3 months before his 11th birthday i was at the end of my rope i had him admited to a center and with in 30 sec of entering the buliding i was asked how he fell into autism i said i just left his dr she said he not there reply was we will let you know in a day or 2 where he falls now we wonder if we will ever be on his own if they would have looked at it closer when he was young for me all i wanted was an answer we got it but a bit late

  13. Anonymous

    We go for my son's medical diagnosis tomorrow afternoon. (His school and early intervention therapies have already diagnosed him). He is 3. If I could have gotten him in when he was 2 I would have. The more we can do earlier on, the better he'll be for it. I don't want miracles, I just want him to be as comfortable in his own skin as he can be. Still nervous for tomorrow, but ready to really get this ball rolling…

  14. gretchen bailey

    Thanks for that. My son wasn't officially diagnosed until kindergarten. I knew long before. I agree that parental instinct should always take precedence.

  15. Love it! This is exactly what I say to parents who confide concerns about their children with me when they find out my son is on the spectrum – go and have the child evaluated. Then you will know, one way or the other, and you will have a path to follow. Knowledge doesn't hurt but fear of the unknown does.

  16. Anonymous

    We got our diagnosis before 2 years old, and it's been a huge help. Even now people say he is fine, but they don't notice the big changes in him, and the many we are still hoping for.

  17. Anonymous

    Thank you for this…my son wasn't diagnosed with Aspergers until age 12 but ADHD at age 6. We have only been getting services for him since he was about 9 because we didn't know. Today we took our 4 year old to a developmental ped because we were seeing signs in her like we saw with our son at that age. We found out today she does have ADHD…and of course our family members are telling us we are crazy for getting a diagnosis so young. But this diagnosis opens up a world of doors for us…and gives us those vital services we need.