- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Success after IF
mommyof4boys
member
They think my child is autistic
mommyof4boys
member
Background, Chris has had what we were told were seizures. He had an MRI done through his eye doctor for an enlarged optic nerve.
The neurologist said they will review the MRI with the attending dr who reviewed it. They want us to see a neuroptholomogist so we're going to Children's Hospital of Philadelphia for that. They want to do another inpatient for an EEG, again in Philly. He will have his hearing tested. We are to redo the MRI at 2. However, she did a complete developmental work up on him and wanted us to call EI. She thinks that the "seizures" that we were told were infantile spasms are actually self stiming behavior and pulled out a scary word. A word no mommy wants to hear. She feels that he may be on the Autism spectrum. She feels he is delayed in language and on the late side for motor.
George approached me on this about 2 months ago, asking if I felt he was autistic and dismissed it as he loves to be held/cuddled and doesn't have a dislike of textures or tastes. We got home at 3 and I called EI as soon as we walked in the door. She said as soon as the testing is done that we're doing now we are to meet in February and then we'll talk about a developmental pedi.
This discussion has been closed.
Re: They think my child is autistic
Oh no, I hope all goes well with all the testing your little guy is getting! I will keep you in my thoughts. Please keep us updated.
That is terribly scary! I'm so sorry. Like pp said, there is such a huge spectrum of autism disorders, and the earlier interventions are started, the better the outcome.
I hope all shows that he is fine, but I'm glad the drs are being so aggressive about having you call EI.
Good luck!
This has to be incredibly scarry for you, I can't imagine. There has been so much research done lately and so many more treatments that can really help kids if it's caught early. I'm certainly hoping they are wrong, but if the worst case scenario comes true, it's great for him that they are testing now.
I'll be thinking of you
E
I hope you're able to get some concrete answers soon! The unknown is the scary part. There are a lot of treatments out there, but success depends upon knowing which part of the autism spectrum you're dealing with. I work with a young man that has been incorrectly diagnosed just about his whole life, so they've been treating him all wrong. Now he's over 18 and it's really hard to start now with the correct treatment. Sending out big hugs to you and your family.
When I was in college, I specalized in severely disabled children and prefered autistic children. I taught 4 out of 7 years with autistic children. Who better to parent him but someone who has a love of children with autism and know a lot about it.
the spectrum varies a LOT... My nephew has diagnosed aspergers since he was in kindergarten. He is very cuddly and social - but has many other characteristics. Aspergers in general, is a very mild form of autism- perhaps that is what your docs are thinking.
i know no mother wants to hear it - but try to look at the bright side- that if he is on the spectrum and he gets an official diagnosis early - he will get EI and that has great results when started early.
My father and nephew are on the spectrum- my dad ran his own business, has 4 kids and a 45+ year marriage... he's just very quirky. My nephew is 17 now and doing great b/c he got EI from pre-K on.
I'm sorry you are going through all this- i know it's hard! You are in my prayers!
oh wow, what a gift indeed! Chris is in great hands regardless and I hope your news is good. You're in my thoughts. Please keep us updated!
Ben and Maggie - 4/10/09
Mia - 6/16/11
Surprise! due 2/23/17
I'm so sorry. I am an EI therapist, and I've met several developmental peds. If it were me, and this was my child, I would also look at going to a multi-disciplinary team for a diagnosis and plan. I would insist that an OT be part of the team.
Have they ruled out any eye and ear problems? I have seen many of my kiddos be misdiagnosed because of vision or hearing issues. I also believe that some of the kids that are given a dx of autism should instead have been dx with Sensory Processing Disorder. Some developmental peds don't diagnose this syndrome, so I would check and make sure that it is a diagnosis that they consider.
One other thing to consider is EI's role in this. I am very adament that EI therapist are NOT qualified to dx. They may see indications, but they are there for therapy and not to dx. I'm not trying to throw a bunch of opinions at you, I'm just in the middle of several messes right now because of misdiagnosis and therapists stepping outside of their fields. You sound very on top of this and it will all work out.
The eye doctor we saw was the one who ordered the MRI because of his enlarged optic nerves. She was also upset that the original neurologist we saw didn't do the MRI due to his tonic clonic seizures that he had (2 of them).
We are going to a neuropthmologist on the 29th and they are doing a hearing test on the 5th of January. The EI people are calling tomorrow to do the initial history on him. The neurologist we saw today was surprised when we did the initial history of him today. My pregnancy was a very difficult one. Her response was "What complication didn't you have?" which was about that.
Sorry, I'm a doink. I read that about the neuropthmologist and still asked about his eyes. It sounds like you have a great plan in motion. I'm not an ASD expert by any means, but I would be happy to talk/listen anytime.
Wow... that is a scary thing to hear! The good news is that you, as the mother, are not that worried, it sounds like there isn't that much to worry about.
Since Autism is a spectrum disorder, he may have some very mild Autism, that can be helped and controlled.
GL and keep us posted.