Hi
I have a daughter who just turned 13, and is severely Autistic and nonverbal. Feel free to ask me anything. I am here for you and your family. We certainly have been down a rocky road with this, and it is extremely stressful!! My daughters behavior and moods can be unpredictable. Since she is a teenager now, she is even more moody than before.
One of the best things you can do is to get therapy for her ASAP. I am talking about Speech therapy and Behavior therapy (ABA) when she's a bit older. You may want to get her an Augmentative Communication device, even if she starts talking a little bit. The Speech therapist should be able to tell you what to do to get one. There is usually a waiting period.
The latest thing we have had to deal with is that our daughter's developmental pediatrician ordered some tests ...pretty much as a routine thing. She had an EEG, and it was abnormal. We still have yet to see the Neurologist, but it seems that our daughter might be having seizures -although I don't think they're severe. Its so hard to tell because she can't talk, and whines a lot. I recently read that people with Autism can begin having seizures when they are about my daughter's age. Somehow I never saw this coming. When my daughter was about 3, she would hit her head on the floor when she was upset. That didn't go on for too long ...thank God. They did an EEG when she was about 5, I think, and that one was normal.
Please let me know if there is anything I can do to help. I forgot to mention that my daughter was diagnosed at age 2 1/2.
Best of luck. Hope you have a good day.

Thanks for your reply. My daughter is going to take her for some advanced tests to get more intense on how bad she is. We don't really know the total extent yet but, hopefully it is not too severe. the latest tests was given by her local pediatrician so, that's why my daughter is exploring this further with more specialists in this field. I have read where some 7 to 25% of those diagnosed with infant autism can grow out of it, usually by school age. I know this is a low percentage but, it was good to know what can happen. I will keep you posted and I appreciate your reply and your offer to help. God Bless you.

Hi OLDBIKER,

Welcome to the group. My son is 17 and is near the severe end of the moderate range. Back when he was diagnosed (about 14 years ago) ABA (Applied Behavior Analysis) therapy was hardly ever covered by insurance in our state, now it is almost always covered in most states. Because Autism is a developmental disability these kids will often see a developmental pediatrician separately from their primary care doctor. Depending on the child's exact health issues they may be seeing a neurologist or child psychologist instead or also. Usually between the specialist and the primary care doctor they will recommend helpful therapies - and make referrals when/where necessary. For speech delays they sometimes try using a few simple sign language signs with the kids to see if they take to it, also there are systems using pictures - a speech therapist can tell you more. My son never took to the sign language or the communication devices, and when the speech therapist sent us home with several pages of pictures to try he took them and put them through the shredder when I was out of the room. At 17 he still struggles with his speech, but is making progress - and your granddaughter will too.

Aside from services through health insurance, services are also available through most local school districts. My son didn't start with the school's "Early Intervention" program until just before he was 3 years old, but you might contact them now to find out for what ages the schools offer this for in your grand-daughter's area, because I think it was available from the age of 2 or 2 1/2 and I just found out about it late..

The other service source I'm aware of would be your local county. They probably have some form of 'disability services'. They can sometimes help families connect with each other and educate themselves and sometimes the counties can provide referrals or respite care services.

Of course your grand-daughter is very young yet. I don't know about growing out of it, but she will be able to learn and develop a lot. And I have heard that kids who start out being rated as more affected can - with early therapy- make enough progress so that they have far fewer signs and symptoms. On the one hand the earlier the kids start some sort of therapy the more they learn and develop. On the other hand all kids need some 'down time' to just be kids. I suppose it's a balancing act and the exact right intensity of therapy is probably unique to each child and family - and probably changes over time (I know what worked for us 5 years ago isn't what's working for us now).

I know it can be a lot to take in in the early days. A solid support system will be useful for everyone.It sounds like you and your family are on top of the situation.

Best Wishes to you all.

Beryl.

Thank You.

hi there. I would highly recommend early intervention program. all school systems should have them. You would need to contact your special education department at your district office. My son went thru the diagnosis at age 5 and even though he was not considered severe, the testing remains the same. they had us do an MRI, EEG, and bloodwork to check for lead. They did this all in one day at the local hospital and sedated him for the entire thing. I agree that a developmental pediatrician is another physician that needs to be involved. there are waiting lists and some even more now that the statistics have changed.

others things to possibly look for is does she make eye contact? does she line up her toys in a row or in a pattern? do things for her have to be in a certain place?

you could also contact your state's autism society to see about resources in your area.

Keep us posted and remember you are not alone .

My daughter took my Grand=daughter to Children's Hospital in St. Louis on Tuesday for a intense diagnosis of how bad her autism is,. She was diagnosed as "moderate", whatever that is. The Dr, said her speech will come but, he said he doesn't know just when, Zori was 2 in June. She is beautiful and very smart but she does have times of tantrums and she can be destructive at other times,
This is a new experience for all of us, To my knowledge, no-one in either of our families have had autism. This will indeed be a learning experience for us all.