Finding Out Lucas Has Autism - Our Story

Two months ago if you asked me if my kids had Autism I would have told you NO. My twin boys, Lucas and Riley, who will be turning 3 in almost a month, have had therapy since they were about 6 months old through the California Early Start Program. We have had everything from Occupational, Educational, Physical, and Speech Therapy. Not once has a therapist thought either one showed the signs of autism.

Over a year ago I requested a behaviorist come in to look at the boys because I wanted some help - nothing major. No one came and I didn't follow up on it. Well, about two months or so ago I finally had one come in. Everything has to be on Lucas' own terms and I wanted advice on how to deal with the situation as a Mom.

I still have a hard time going to the park or fun places like the aquarium by myself with the boys. I really felt it was my fault and thought a behaviorist could help me. Well, after a two plus hour evaluation the behaviorist looked at me and told me that she thought Lucas might have Autism and I should really have him tested ASAP. She made the call while I sat with her on the sofa in my family room. At the time we also decided to have Riley tested as well. Better to be safe than sorry.

What Did The Behaviorist See?

• Lack of Eye Contact
  It took me 75 times nose to nose with Lucas for him to look at me and respond to his name
• Repetitive Motions
  Turning Lights On and Off
  Lining Up Cars
• Non-Functional Play
  Spinning Wheels on Cars Rather than Imaginary Play with them
• Canned Phrases
  He has great vocabulary but if you listen to him a lot of it are phrases he repeats from TV, Movies or something he hears someone else say
• He Repeats Himself
  His phrasing is verbatim, over and over (echolalia is the technical term)
• Pointing
  He wouldn't point at objects - His vocabulary is so good that if you asked him what he wanted he would tell you but not point to it. He has the speech of a 5 year old.
  Also he has trouble following visually if you point to something

Why Didn't Anyone Else See It?
It took 6 weeks (not the original expected 2 weeks) for us to get the boys in to be tested. Unfortunately we had the holidays to contend with for scheduling. During that time we asked ourselves, the therapists and our pediatrician the same question - Do you think so?

The answer - No, couldn't be. He is so smart. He passed the CHAT test. But, the more we watched, the more we thought maybe... the behaviorist didn't see anything we don't see. Then there were other signs we originally thought were play:

• Spinning
• Sitting In Chairs  - Giving Himself a Time Out (a break he needed)

Never Discount Your Teachers
My boys go to school twice a week and their preschool teachers have been extremely helpful. They have kept an open dialogue with us and Lucas' Occupational Therapist. Through this we were able to discover one more key element which we saw one or two times but didn't know how it fit into the puzzle:

• Large Social Settings
  Lucas needs to take a break and go sit in a corner when he is over stimulated
  **Before diagnosis we were told you can have sensory issues and not have Autism but all kids with Autism have some form of sensory issue.

The Diagnosis
So after 6 weeks and all of this information, it was time for Lucas and Riley's testing. They were on separate days. Lucas was first. My husband Jordan went with us to help answer questions and observe. Lucas is a Daddy's boy, so it was good to have him there for that as well. Lucas' testing wound up taking over 3 hours instead of the usual 2 hours - he finished the book because he tests above age level in a number of categories. Book goes to age 3.5 for his age group.

When the psychologist was done she told us he was on the spectrum but needed to do some interviewing for a final diagnosis. It was not Aspergers. Lucas communication style is such that he cannot carry on a conversation with someone else. If you ask him a question, he responds with something random. Example -  in the middle of his testing he shouted GO CHARGERS! At least we know what team he likes!

After interviewing Lucas' therapists and teachers, as well as all the reasons I detailed above plus the personal interaction she has with him he was given the diagnosis of Autism.

Riley's testing went very differently - he went in and tested for the typical 2 hours. Jordan and I answered questions. Then the psychologist told us how nice it was to have Riley in her office to play and talk to. He is fine.

What's Next
This is where I am starting to, for lack of a better word, go crazy. We are supposed to be starting ABA services (this is a scientific based approach to intensive therapy) through the Early Start Program we are in 5 days a week 2 hours a day on top of the other therapy we already receive (~69 hours/month). Great! Let's help Lucas. We only have 4 more weeks to go... So far they have only found 1 of the 2 therapists to work with Lucas for ABA services. Ok fine, we are working on it.

Why only 4 more weeks - Once the kids turn 3 they go from Early Start to the School District. Lucas and Riley start testing this Friday for services in their school district. These services go into effect when they turn 3 on April 2, 2011.  Services are based on need and IEP (individualized Education Planning) meetings between parents and teachers of the school district. We are very lucky that our Preschool Teachers are going to join us and help us through this process.

I will keep you posted on how the School District Testing goes. This is all new to me. Sorry for such a long first post, but a lot has happened to get us to where we are today!