Expert: Jene Aviram - 6/25/2009

Question
My 4 yr old grandson is unable to speak in an intelligible manner. A course of speech therapy does not seem to have helped a lot. He is also throwing tantrums for no reason and often bangs his head on the floor. At age 2 it was not uncommon for him to fall out of bed at night. He engages with parents but when I picked him up his body was rigid and his head turned away while I was singing Old MacDonald to him. He was able to sing E-I-E-I-O but that's all. He can count to five but always plays with the same drawing board toy. His 2 yr old brother speaks, plays, shares, counts to 10, sings along with multiple songs. That's when my daughter recognized the real problem. The next challenge is how to get a diagnosis and therapy when she her family income is just above Medicaid and the child only qualifies for KidCare. With 3 sons and a step-daughter, they are struggling which may have caused them to avoid this until now. My husband and I are willing to pay to help if necessary so that something can be done soon and the problem is addressed before school age. He seems like a happy child except when he exhibits tantrums. He tries so hard to repeat words but can't make the sounds. He repeats patterns -- traces his hand on paper and then counts the fingers but counts each finger twice, i.e. 1,1,2,2,3,3,4,4,5,5. My daughter thought he was OCD because when shopping in a store he seemed to have to touch every piece of clothing in a row, but I don't recognize other OCD behaviors. He will sometimes trace only 2 fingers and count them 1,1,2,2. So he does deviate somewhat.

Please tell me what resources are available; what kind of dr. to take him to for evaluation. The doctors I have called in the Orlando area either have waiting lists or are not accepting new patients. The 3rd one is retiring.
For 2 years I've been trying to convince my daughter that he needed to be evaluated and she's finally ready. Now I want to know what to do and help her do it. I don't think that I mentioned the difficulty in potty training. I believe he sleeps in pull-ups and is potty trained now, but only recently.

Answer
Hi Susan,

Your assessment is correct that your grandson should have an evaluation. It sounds like your daughter has been in crisis management, and trying to cope with the stress in her daily life.  When this happens, all too often, through no fault of our own, we delay items as it feels impossible to take on an additional problem.

It must be very frustrating for you right now as you're eager to get help for your grandson and it feels like every door is closed. I'm not sure what state you live in but if your grandson does get a diagnosis, he should qualify for services and you should NOT have to pay.  The first step is getting an evaluation.

The first thing I would do is ask your grandson's pediatrician that you need a referral because you're concerned that your grandson is on the autism spectrum.  Even if the waiting list is long, put your name down.  The time goes quicker than you think.  After that, you can also call on a daily basis and ask if there is a cancellation. I've seen many people get a fast evaluation with some persistence.

In addition to the names your pediatrician gives you, see if you can find a developmental pediatrician or a psychologist that specializes in the autism spectrum.

I would also go to this link.  It's the autism society of America.  Search for the chapter in your area and then call them to find out about evaluators in your area, services, your rights etc.  http://www.autism-society.org/site/PageServer?pagename=community_chapters

Another place you can check is the following.  Go to this website, put in your state and call some places to ask for guidance.
http://www.nichcy.org/Pages/StateSpecificInfo.aspx

Regarding your grandson, some of the behaviors you mention are concerning.  Having tantrums for no reason, banging his head on the floor, being rigid in his ways and body movements and always playing with the same toy are definitely areas of concern.  These are often found in children with autism, but I'm certainly not saying he's on the spectrum.  He needs a full evaluation and as evidenced by his sibling, he will benefit greatly from services.

I think an article you will find very helpful is called "How do you know if your child has autism?"  You can find it at this link and I think it might clarify some things for you.
http://www.nlconcepts.com/autism-howdoyouknow.htm

I know it can feel overwhelming when you are trying to get everything done.  It's wonderful what a caring and proactive grandma you are.  Your daughter and grandson are lucky to have you in their life.  I wish you and your family success and happiness.

Jene Aviram
http://www.nlconcepts.com