I solicited some responses a while back in regards to my daughter. I received lots of feedback which I appreciate immensly! I went through the Early Steps program to have her evaluated since she wasn't really talking. They did the full spectrum of tests. At the end the women asked if I had any questions and I laid it on the table and asked what she thought "as a mother", did she think my daughter had autism. She responded that she did not feel that my daughter would rank on the spectrum based on the rating tool. She also said that she was making good eye contact, was very social, and had clear communicative intent even though she was not saying words we could understand. My daughter ranked as a 53 on language, 74 on cognition, and within the 85-115 nromal range for all other areas. I am wondering what you all think. I have been private paying a CBA to do verbal behavior with her 10 hours a week for the past three weeks. SHe has made tremendous progress. Before then she would babble but never really had words. SInce the test she has even been able to identify animals in books and make the appropriate noise to with it. She has some articulation problems with the words she is now saying but they are identifiable. She is saying, up, duck, da, whale, dog, shoes, no, and a few more just in the span of a few weeks. I am wondering what you all think. She does make eye contact for extended periods of time, seeks me out to give me kisses, pulls me to play with her, is lovable and extremely social!!! She pretend plays with things like phones and plastic barnyard animals, cars, etc...On the flip side she doesn't always respond to her name and is below the normal language and cognitive scores and remains a clumsy child..always falling. She has a large head and the woman said she was "soft" (low muscle tone) but not to worry since she was within normal range for motoer skills. I am still lost. I know there is something wrong but I am not sure what it is. I am afraid to go to the Developmental pediatrician for a diagnosis without giving her time with therapy. Should I get a diagnosis if I am able to get her thearpy that targets her delays? HELP
I say, good for you, getting her therapy! Can you continue the therapy a while and put off diagnosis longer? She may jsut have had some mild, isolated delays, and the therapy is helping her!
Also, could she have fragile X? They have some autism-like features, but tend to be more sociable, and sometimes have "elective" (ie voluntary) mutism. I am wondering about this dx for my daughter ... but have not looked into genetic testing for her, yet. Google Fragile X -- one of the top ten sites gives a great description!
I had to think a bit before I responded to your post. I am just going to tell you what happened to us w/ our DS, who is now 6 1/2. He did all the normal toddler stuff at 20mo., except talk. Not a single word. He pointed, understood language, made eye contact, etc. Early Intervention tested him and said he is fine in gross and fine motor, and he is just a bit slow on speech, he'll catch up. I had listened to everyone tell me he was just a boy, they are slower, you worry too much etc. So I trusted THEM and DID NOT trust my mothering instinct. Comer was my 4th child, but my 1st boy. I said to myself maybe they are right, Iam just be paranoid.
By age 5 I knew something was seriously wrong with our child. He could still pass as NT from the viewpoint of a stranger observing him. They might htink I needed to give him a good swat every now and then. But let me tell you, this boy cried and screamed and physically abused himself at the slighest change. I once cleaned the dead bugs out of his ligh fixture and he flailed around, screaming and hitting his head for almost an hour. My DH had to go restrain him. We couldnt go anywhere, we were housebound.
We lost many precious years of therapy because I listened to people who did not know my child best, who did not have a vested intrest in him. So, keep going and do what YOU feel is right. You will never regret that. I didnt, and I regret it so much.
Did Early Steps offer any services? You only mentioned private therapy unless I overlooked something.
As far as a Developmental Pediatrician goes, I think waiting could actually obscure the issue. I mean, it's great that she shows improvement with therapy, but most kids don't require therapy at all, and not every diagnostician is able to really take into consideration that the skills the child shows were built up "artificially."
However, my main concern right now would actually be to get a good hearing and vision test, if they haven't already been done, and to get the low tone evaluated by a physical therapist. Hearing, vision and muscle tone can all affect concentration ability, and thus learning ability.
Good luck with everything.
I will just add that the EI evaluators were never the ones to catch my kids ASD. I was actually the one that has pushed for a psychological eval for each of them. The EIs here qualified my 3 kids for speech only. My 5 1/2 year old just got a PDD-NOS dx as did my 2 year old. My 3 year old is due for an eval in November. If you have that nagging feeling I wouldn't let it go. Nowadays, I only trust an opinion from a really good devel ped or psychologist. I'm not sure how yours was done, but here they do a full range of tests but not an ASD (that includes the ADOS).
You have every reason to hope for improvement once her hearing and her sleep apnea are properly treated! Two of your main concerns were not responding to her name and language delays -- both explainable by hearing difficulties.
Another concern, low muscle tone, is sometimes seen in children with autism but is not part of the triad of impairments (language, social and repetitive/narrow interests/activities).
My husband has sleep apnea, and started using a breathing mask this year, and the difference is INCREDIBLE. A good night's sleep is so important.
Good luck with everything!
Early steps did offer one hour of speech a week and one hour of an EI teacher in the classroom. I forget to mention in the orgiginal post that she did pass a hearing test but after we saw an ENT and did a sleep study it was determined that she has mild obstructive sleep apnea. He recommended that the tonsils and adenoids come out. He also recommended tubes in her ears because of her chronic ear infections. BUT she passes her hearing test???? I just don't know what to think she doesn't display any of the classic signs, no repetitive behaviors, no problems with routine changes, she doesn't line anything up, and she truly enojoys socializing with other kids at school. I am hoping this surgery we have planned next week will help but only time will tell. I just want to know what is going on but I don't want to label her prematurely and this turn out to be a simple language delay.I agree with Norway Mom. But I would also push to get an evaluation for Physical Therapy. If she has low muscle tone - it will only benefit her to get help for that, especially if she seems clumsy. My ds has low muscle tone in his upper body and PT helped him TREMENDOUSLY! Also look into tumbling/gymnastics classes to help with that as well. To give you an example, my ds went from not being able to pedal a tricycle at age 4 to taking off the training wheels on his bike right before he turned 6!
Good luck - I think that getting the apnea and hearing are properly treated you will see huge improvement. I hope so!