My DD was diagnosed with Autism yesterday

DougsBrideOct04

I guess I'm just sad and scared and looking for some support.  My DD is almost 20 months old.  At 12 months she was diagnosed with Infantile Spasms, a seizure disorder.  That has been succesfully treated, but she continues to have abnormal EEG's although the seizures have stopped.  She is very delayed, but we have just assumed it goes along with her seizure diagnosis.  She has been in EI since 9 months.  She started walking at 17 months, but has no words yet.  She has only recently started babbling.

At our last visit with the neuro in May he suggested seeing a developmental neuropsychologist.  Our appointment was yesterday and after evaluating her the doctor said she is on the autism spectrum and possibly has mental retardation as well.  I knew she would talk about her delays, but I thought she might say it was too soon to diagnosis anything due to the seizures.  She seemed very certain that it is autism.  She did say that we would not know the extent of where she will be on the spectrum for a number of years.  She wants her to start in ABA therapy right away.

I have read some about ABA therapy but I'm wondering how much therapy is typical for a child her age?  Do any of you who have ABA also still have the EI therapists, or will it be switched over to just the ABA?  Is ABA a good program for children her age?

I've been so focused on her seizures that I don't know which way to turn now.  I'm just overwhelmed.

Thanks!

His(1&only)wife

I don't have much advice as my DS was only recently diagnosed as being on the spectrum.  I do however want to offer hugs and support as you process all this new information.

ela81

Like pp I don't really have much advice right now. Just wanted to offer hugs. My DD was diagnosed with Autism 5 months ago. We have not done ABA therapy but, I did buy a book suggested by the developmental pedi. that is supposed to walk me through it. My dd does speech therapy and occupational therapy both 2X a week.

While I'm not in your exact shoes I understand the shock of hearing something you did not completely expect. I thought my dd would be "mild" or maybe PDD-NOS but, she was diagnosed as severe, I did not see that coming. She was 2 years and 5 months at the time.

DougsBrideOct04

Thank you all for the support and information.  I really appreciate it.  I'm sure I'll be posting here more often now.

lite-bright

I don't have a whole lot of specific advice, but I just wanted to say hi. 

My DD1 is on the spectrum as well; we got her diagnosis in March. It is a hard thing to process, and it sounds like you're already dealing with a lot. I found Making Sense of Autism Spectrum Disorders by Dr. James Coplan was really helpful in giving an overview of what mainstream autism treatments (like ABA) look like and helping us make treatment decisions for our DD1. 

The ladies here are very welcoming and supportive, and there are a lot of us here with kids with ASD. Best of luck to you!

rjveldman

My DD was officially diagnosed with autism when she was 5 and there was a bit of grief but also a bit of relief. And the more I learned about her and autism, I discovered that parenting a child with autism was not harder - it's just different. You will even find that you don't have to deal with a lot of the things that 'normal' parents don't have to deal with. My child isn't capable of lying (she's a complete rule follower) and I never have to worry about her spending hours in front of the mirror. When she was 5 I took her to art museums and monuments in DC and she ate it up. Most kids would be bored.

I honestly live by the poem called "Welcome to Holland". Here is the link:

https://users.erols.com/jmatts/welcome to holland.html

 

houndbaby

My ds was officially diagnosed about 2 months ago. We do about 20 hours of floortime a week, 1 hr of speech therapy a week and my ds is in a "preschool" classroom 2 days a week for 2 hrs. We currently do all of our therapy through EI. Our dev. pedi doesn't recommend ABA until age 3.

devilingucci

AJ was diagnosed with Autism when he was 23 months old.  We receive 30 hours of ABA a week, three 45 minute OT sessions in my living room (which I have turned into a sensory gym) and four 45 minute speech sessions (oral motor / PROMPT).  All of the therapies are through EI (we fought the country tooth and nail to get them).  I also have private doctors and therapists who see AJ every 3 or 4 months.  They write treatment plans and the therapists follow them.  Since AJ has so much therapy, I also hold meetings for all of his ABA therapists to discuss his programs... what's working, not working, etc.  

It sounds like a lot but the changes we have seen in AJ are amazing.  He responds to his name now about 50% of the time (before was none), his eye contact is that of a typical child his age, he is now waving, clapping, pointing, touching his head, etc.  He did none of this before.  He still has no words and that is our biggest struggle but we are getting there...

 

nomadica

My DS was diagnosed with PDD-NOS at 14 months. It's a really hard thing to process, but over the past 4 months I have found myself reaching a place of some acceptance. DS currently gets 10 hours of ABA, 1 hour speech, and 1 hour OT every week. Next month the ABA hours are going to increase to 20 hours per week, as he seems capable of tolerating more as he gets a little older. We have seen tons of improvement! The ABA therapist works a lot on communication, and DS's receptive language has improved significantly, and he now has 5 signs he uses to communicate. He's also made huge gains in his ability to imitate and is copying sounds and even songs. I have noticed his desire to interact skyrocket as he is better able to communicate. This is after being in ABA therapy for only 2 1/2 months. Anyway, hugs and good luck to you. Feel free to PM is you have any questions:)

melissa&mark

My 15 month old daughter also has Infantile Spasms (luckily seizure free for now). Being that you've been dealing with IS for the last 8 months I'm sure you've found the Infantile Spasms forum but if not you should definitely check it out, I know some of the children on there also had autism dx.

melissa&mark

LOL I guess I need to change my siggy, it's been a while since I've posted over here.