Autism?

khagan9368 · September 2012

This is my first time on this board and I'm still in a state of shock so forgive me if I'm all over the place. I took my 3 yr old for an evaluation today because I have been concerned about her speech. Her pedi told me she thought it would correct itself when she started school and got to socialize more she was home with me a lot before that
Anyway after an hour with the pathologist I was brought in the room and told they thought my DD had autism. I have never been so shocked in all my life. I knew she needed extra help but this news floored me. I guess I'm just looking for anyone with stories like mine. Where to go from here? Obviously I'm following through with further testing and special needs services but I'm still feeling lost and scared :
Thanks

mjsweetgirl · September 2012

Sending big hugs to you!! My DS was 2.5 y/o when we got his dx. I would contact your local early intervention office, and although your DD might be too old for EI (in CO age 3 is when DS aged out of EI services). They can at lease point you in the right direction for therapy/services etc. Also, reach out to your local autism society chapter. Just type Autism Society and your city and see what pops up. Autism Speaks is also a great resource. I hope that information is somewhat helpful.

houndbaby · September 2012

We had ds in EI and his SLP told us she thought my ds had autism a few months after my ds turned 2. It hit me like a ton of bricks and I felt pretty lost at the time, it takes some time to work through your own feeling and get a grip on things. My first step was making an appt with a dev pedi to get a dx, my ds was a bit younger and in EI so they really helped point us in the right direction, you may be able to get some info from your local board of dd. Since your dd is 3 you should be able to get your dd evaluated for services through the school district, you dont need a dx from the dev pedi for that (or maybe thats the eval you had today?)

ABColeslaw · September 2012

What reasoning did they give you? Did they do an MCHAT on her? I would think they would refer you to a developmental pedi or pediatric neurologist before stating that opinion.

Next steps for you would be to go see a developmenal pedi. That doctor will probably want to do an MCHAT or ADOS.

I reacted very badly to my son's diagnosis. I didn't imagine he'd be doing as well as he is, with just five months of therapies. Keep your chin up and pick up the phone, call for a referral.

GAPeachTTC · September 2012

Do not get too stressed out until you take her to a Developmental Pediatrican. The Austism Spectrum is large. My Son has slight Autism and is high functioning. IF your Child has Autism, there are lots of therapy options. You are certainly not alone. Has anyone noticed that Autism seems to be a really common diagnosis right now? When I was growing up I knew lots of kids diagnosed as ADD or ADHD. Now it seems like every time I turn around I meet someone else with an Autistic Child, or see a story in People about a celebrity with an Autistic Child. It's really becoming quite common.

lite-bright · September 2012

I can relate. Just before three, we had our DD1's speech evaluated -- we thought she just had a speech delay. Instead we were told that yes, she had a speech delay, but we needed a full developmental eval. Which at least gave us the idea that maybe something was wrong, but we didn't know what. Several months later, after the eval, we got her dx of autism.

The first adjustment period is hard. It's scary. All of a sudden the normal life that you thought your child would have is in jeopardy and facing not-very-good odds. All I can say is that it gets better, it gets easier to deal with and accept -- but it can take some time. You have to process it all, and there's a grieving process that goes on. I'm a lot more positive now than I was at the beginning. It helps that DD1 is making very good progress and her therapists are very optimistic about her future.

I found this really helpful for both me and my DH. It gave me a lot of direction as far as where to put my energy that was most helpful.

https://www.autismspeaks.org/family-services/tool-kits/100-day-kit

We're a really supportive bunch, and many of us have been where you are. Please don't hesitate to ask questions, vent, etc. And sending lots of good thoughts to you -- it's really hard to be where you are, I know.

ETA: I'm not sure from your post who the diagnosing professional was, or whether this was an EI or school district evaluation, or a private one. We got our official medical dx from a child psych, but developmental pedis also are qualified to dx autism. A speech pathologist is not -- which is why the speech pathologist who did DD1's initial speech evaluation did not even mention the possibility of autism, just told us she needed further evaluation. I'm sure she knew or had a good professional guess, though. We had an evaluation through our school district soon after the offiical psych eval, and DD1 qualified for services before we had an official diagnosis.

khagan9368 · September 2012

Thank you so much for the support, whoever compared it to being hit by a wave is right, well, like being hit by a tsunami..
She was evaluated by a pathologist... I brought her in to get help with her speech and her attention span, never even imagined autism on any level. She is a very outgoing little girl who seemed to get along well with peers. She repeats herself a lot and now that she's getting older she is having a harder time with kids that don't know her they don't understand her. I attributed that to her lack of socialization, I just had a baby 2 months ago so we had been spending a lot of time at home, watching too much tv etc. I just thought she'd adjust in school. Anyway I'm all over the place again. After her initial eval we did some 15 question thing where Kayla scored at the top of the high level... No idea what it was called. I was on autopilot by that point. I will find out more at the parent counseling session...

khagan9368 · September 2012

Ok just looked at the papers and she gave her the ASRS short form? Results were highly elevated...
And it was through the school system

lindzed · September 2012

We had a similar experience, I would suggest finding a developmental pedi and getting an appt. it often takes a while to get into see one. In the mean time I would just work on the issues you see. Honestly I read the symptoms a hundred times and even now somedays I see it and somedays I don't. To me focusing on helping specific areas of weakness can never be a bad idea regardless of what the pedi says.

NiniJ55 · September 2012

khagan9368:
Ok just looked at the papers and she gave her the ASRS short form? Results were highly elevated... And it was through the school system

I almost never post on here - but felt the need to comment. Your evaluation was through the Board of Ed becuase in NY they age out of Early Intervention at 3 yrs. old. DS is being evaluated for preschool tomorrow, as a matter of fact, because he will age out of Early Intervention on his third birthday in February. When he turned 2 yrs old I had him evaluated becuase he was pretty much non-verbal. I knew his speech was delayed no matter what anyone tried to tell me. "they" kept saying that his speech will come when he starts school or daycare. Well, I took him in anyway cause I just felt like something was not right. DS was diagnosed on the spot at his evaluation (PDD-NOS).

Anyway... I just wanted to say that I have seen tremendous improvement in DS since starting his therapies in March. There are many options for therapy. DS does 20 hours a week of ABA therapy and 5 days a week of speech therapy.

I know hearing this news is hard. **Huggs**

I've heard a lot of stories of being diagnosed after a parent has concerns for speech delay or other speech problems. Just want you to know you are not alone. The people on here are so very helpful.

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