Well, two months now after my initial concerns about Elliot (33 months), he was finally seen by a pediatric neurologist today, who diagnosed him as mildly autistic. I know there was another thread about neurologists, but I thought this doctor was wonderful. He spent over an hour examining my son in every way -physically, all kinds of behavioral and language tests, and a detailed history from me. Then he filled out the CARS and came back to me with the results. He actually scored a 28 from the doctor which is boderline, but falls just slightly in the "not autistic" category, but under #15, his general impression, he circled "mildly autistic". He then explained about the fact that Elliot is still young, tests are subjective, and his overall impression of my ds is that he has enough autistic tendancies to be definitely on the spectrum, and on a little time line sort of chart he drew for me, he believes Elliot falls somewhere on the milder end, while not being Aspergers. He also wants to see him again in 6 months to reevaluate and possibly do some of the brain tests when he's a bit older.
I felt really good that I think he got a very clear picture of Elliot. He followed all of the directions from the doctor, "can you put this in the bag" "give this to your mommy" "now can you get it back for me" "walk to the door", etc. He answered his specific questions like colors and counting. He imitated things the doctor did very well. And he answered correctly to all the routine type things I've taught him, "How are you?" "I fine", "How old are you?" "I 2". BUT when he tried to get him talking about anything more conversational than that it was complete jibberish or off topic phrases. He heard some of his echolalia, saw his good eye contact but that you often have to ask him something more than once for a response. He also noted that he was walking around in an oval pattern in the office. Elliot also got carried away taking his tissues out of a box and throwing them in the trash can one at a time (embarrasing!) We had to go out to the play room and grab a couple of toys to distract him from doing it. He also said something about Elliot having "quick reflexes" in his legs and feet, but didnt think it was severe enough to look more into just yet. Anyone know anything about this?? Does that relate to autism somehow?
Considering how worried and scared I've been about him for the last couple months of basically not knowing anything for sure (our new pediatrician just gave referrals and the psychologist she sent me to told us we were sent to the wrong place) I feel just amazingly at peace about this. It's not like it was a shock, and I feel like now we have some direction...yes he needs therapy but now I know where and what kind. And the doctor, while stressing that things with a diagnosis can change, he thought Elliot was very intelligent, and that with therapy he may not even have serious issues in school.
So, I'm off to go do some more research into how I can help him more at home in the meantime. Appointment with speech therapy is next week. And I'm going to call a center here that does an interesting mix of one-on-one ABA, and small group therapy which I think would be great for him.
Rachel
MARK: Strange coincidence that both our sons are named Elliot (spelled the same) and both born in October. My son's birthday is the 19th. We don't meet many other Elliots!
Rachel,
I'm glad your Dx went so smooth and was a very positive experience. I don't know anything about the quick reflexes. Sorry.
I also had a Dr. who showed me with a line were my son was on the spectrum it helped but I was in a little shock. I had seen all the signs but I still thought he might just be oppisitional like his ODD older brother. My son was Dxed HFA.
I just wanted to add that I noticed with my son offically turning 3 made a huge difference. My son became verbal and made great progress that year and he learned so much. My son is now only delayed in his communication skills by one year and they told me that is a very big acomplishment.
Nelle
PS. Welcome to the board!
Thanks for the welcome Nelle. It is very encouraging to hear that your son has become so verbal. Good for him, working so hard! It's my hugest concern. Will my son ever talk to me about things? Ask me questions? It's so hard to know how much he really understands of what he even can say. I feel like I don't really know much of what's going on in there. I spent so much time crying....a lot of it, while I was sitting around doing nothing but reading and researching while waiting for appointments, and feeling like I just kept seeing more and more signs, so that is why I think I felt prepared for it. I was so upset and scared. Needed sleeping pills, would do things like take a shower and realize after I blow dried it that I'd forgotten to wash my hair, and went through a whole day before realizing I hadn't eaten anything. Oddly enough, I think the speech evaluation might be more difficult when they actually do more of the standardized type tests, and tell me things like percentages, and what age he is functioning on, etc. Being told he is high functioning when I knew he would be on the spectrum was encouraging, but numbers and percentages are going to feel very real.
Rachel
I had, too, had a terrible time at the beginning with depression and anxiety and sleeplessness....I never forget to eat though. I wish I would. For me the hard part was finding an even keel. The first couple of years I went up and down with all of Paul's ups and downs. I finally learned (and continue to learn) to not get too excited when things were good because then I'd have all the further to fall when they fell again. You can see on the board that our kids are all experiencing gains. The interventions are working--it's just a lot of work sorting through them, finding the help, the resources, etc. It's not easy but if you can hang with the tough the rewards are beyond anything I've ever experienced.
Take care of yourself so there is enough of you to take care of Eliot and the people you love. And don't let the numbers freak you out. My Paul is doing very well, always has made steady growth and improvements, but he always tests a couple of years behind and his skills are all over the place. It comes with the territory. It's information to help you know how to help him. That's all it is.
You're doing a good job Mom!
I'm glad the diagnosis part is finally behind you. I'm still in the waiting room until Sept (sigh). I'm also glad it went so well for you. Sounds like the dr was very thorough and made sure he knew what was really on. Now you can just move forward. I hope everything goes well for you both and that your ds progresses well. :-) And I also know about asking more than once. Repeating is very common in our home and it gets very frustrating!
Amber
I also have no clue what he meant by quick reflexes sorry.
Cathie,
I used to live in Macomb Il. I know at the university they have a great speech therapy program. Its a great college maybe someone around there. Are you near Iowa City they probably have lots of resources.
My son is not as yet diagnosed only as possible autism. Although it hard to get the diagnosis I know that the diagnosis gets my son services that i could not afford otherwise. We follow up with the neuro next wed. I did not really like him. As one of his reasons for the possible diagnosis is the fact he melted down at the neuro and cries. . . .I've also noticed he only starts to cry once in the exam room when the doctor comes in the room. He has had numerous test done eeg and mri xray. Was in a medical study where he had to get his bllod drawn every month and was held down by at least three people. I think some of the problem is white coat syndrome. Plus he gets a toy or a book the louder he screams. . . .
Stephanie
Tyler is newly diagnosed and also is "mildy autistic" - basically he is an affectionate autisitic child that is non-verbal. I am having a terrible time finding autistic specific treatment. Anyone familiar with eastern Iowa/Western Illinois?
The advice about taking care of yourself is the key - I learned that if I am sick or having a "nervous breakdown" all the time I not only am not available to my family but I am also not teaching them coping skills and self-esteem; low self-esteem is very dangerous in this society and will be a magnet for drugs and kids that will lead our kids into the wrong path.
Good luck to all and keep up the support, it is so needed for us all and we know that it is real because we all are going through the same thing.
Cathie
Rachel --