What do I do with this diagnosis?

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Hello,

My son will turn 2 in October. We are based in Houston, TX. My wife and I have been concerned with the issue that he has not been showing signs of development in certain areas - he does not react when called, has a limited vocabulary (10-15 single words). He does flap his arms and lines up items such as toys. Our paediatrician has been advising us to wait until he is 2 before doing an evaluation. My wife and son left for India in August.

They are currently in India. During a visit to my cousin's (who's a child development specialist), he noticed that my son did show some signs of Autism. He recommended we get him evaluated. We got him evaluated at a child development center in India and the diagnosis is that he has mild to moderate autism. They conducted ADOS, Gessel (he scored 22 in Gessel), and PEP-R. I am still reading up on these things to be able to make any sense out of them. They said that his mental age is at 14 months and his development quotient (DQ) can't be determined since it shows too much "scatter". They also said that he has 5 "emerging traits".

My cousin's recommendation was to enroll my son into a special 3 month therapy program that's offered at a highly reputed center in India. This is what my wife has been doing - she has enrolled him for the therapy and right now they are doing ABA.

His vision and hearing have been tested and they are normal. He did have tubes inserted in his ears when he was 15 months old, due to hearing loss from fluid build up behind his ear drums during infections. His motor skills and physical attributes are normal.

What can I do here so that when they return in January, we can continue to provide good therapy for my son? How do I coordinate this? Any suggestions? Where do I start. I am lost ....

Regards,
Kid

Hi Kid. The first thing you need to do is get your wife scan the doc with the diagnosis and send it to you. She also needs to get a written report of the treatment he has been receiving there, so the work can be continued in the new location. You need to contact autism centers in your area. I did a little reseach and found some links that might be helpful: http://www.autismkey.com/autism-organizations, http://www.ctac1.com, http://www.atcoftexas.org/index.htm. Good luck.

Autism Speaks has a state-by-state listing of resources in the US. http://www.autismspeaks.org/community/fsdb/search.php

I guess my first question is - do you have insurance? I'd start by finding the places your insurance company covers, taking the diagnosis to them (as described by the other post) and finding out if they can continue the therapy. Typically, insurance will cover a pediatric neurologist at the very least, and it's a good place to start - insurance companies are usually savvy to the more conservative treatments that work for the largest number of children.

If those don't work for you, you at least have a starting point for finding the therapies that work for your child.

Also, remember to breathe! It can be scary during the time when your child is first diagnosed and your situation is probably made worse by being separated from your wife and son. Check out the reading list stickie at the top of this board and see if there are some books that apply for your situation with a young toddler. Many here have children that are older so some of the stuff that I would normally suggest as far a reading material may not be where you are at yet. In a large metropolitan area like Houston, you are bound to find support groups and other resources that can help. Take care of yourself!

Thanks for the support! Yes, we do have insurance with Cigna, through my employer. I have asked my wife to get a report and send it to me. I will start calling up my insurance and do some reading.....