Expert: James Michael Roan - 9/6/2007

Question
hi,

i have a 2 yr 7mo old nephew who has very little speech. he does not know his body parts well and does not seem very curious about his environment. he is also small for his age and we have a very difficult time getting him to eat. he basically survives on pediasure and carnation instant breakfast. as an infant, he was very orally defensive about bottles and because of this was never able to take a bottle and went straight from breast feeding to sippy cups and solids. he also developed very slowly physically. he rarely babbled and did not crawl until he was about a year old. he is extremely picky about his foods and will only eat about 5 foods with any sort of consistency. even then, there are days when we simply cannot get him to eat and he will drink pediasure from his sippy cup all day. he only says a couple of words. he says "mom, no, hey, dog, ball and whats that." he also does not use most of those words correctly. for instance, if you ask him a yes/no question, he will always answer no and everyone is mom. none of his vocabulary is very clear. especially his "whats that." it sounds more like whaaaaaa daaaaaa. he only recently in the last couple of months began pointing at things. as you can imagine, since he is unable to express himself he has frequent tantrums, especially when it comes to trying to get him to try new foods. we read picture books to him and try to get him to name his body parts, but its like it doesn't click. he will follow some simple commands, but that has only been within the last 6 months. prior to that, it was difficult to even get him to respond to his name. he has had his hearing tested and his hearing is fine.  he does not tell us if anything hurts, and at 2.5, potty training is not really an option-he is simply not aware enough about his body, nor does he have the ability to tell us anything about his body. he actually rarely ever even cries in pain. he has just recently been referred to a speech therapist to begin to assess his delays. i am wondering though, should he also be seen by a physical therapist or an occupational therapist because he seems to have a long history of very slow physical development(poor weight gain--only 18 lbs @1yr [and this was after an intense effort to bring up his weight with high calorie foods, he was not on the growth chart and nearly labeled failure to thrive because of his extremely low weight], not rolling over till 6 months, not sitting up till 8 mos, not crawling till 11 mos and not walking till 14 mos), sensory issues (hated his bath, extreme aversion to bottles as an infant, hated tummy time--to the point where we could not work on his tummy time effectively, gets extremely upset during diaper and clothing changes, seems to not notice painful things like falling, and needs lots of swinging and being spun around,etc when he interacts with people)? i know that if a speech therapist feels as though there is a more global problem going on, then they can refer, but i am concerned because he currently has private insurance but this runs out in october. also, since he is nearly three, can we begin looking into services through the school district? or do we need to wait on that as well? i am getting tired of waiting because i know that the earlier the treatment the better, but it just feels like everyone wants to drag thier feet on this--including his parents. are there other avenues that we can explore simultaneously to get him the most help possible as quick as possible? what can i do as a non-parent to help him and convince his parents to work more quickly to get this taken care of. no one seems overly concerned about his development but me. i have been pushing them since he was a year old and not walking. he also does this thing when he spins in circles where his eyes go to the side of his head instead of remaining in the middle. its like his eyes are leading his body into the turn. what is the diagnostic process for autism and what else can i do to get this ball rolling. i am tired of seeing him lag further and further behind!

Answer
Hi Meagan;

Well, let me jump to the chase:

1. School districts in the U.S. are responsible for that assessment and service provision from birth to 21. Contact them and make a special education referral and they will get the ball rolling.

2. I am hearing sensory and expressive language delays, probably due to some mild neurological delay.

3. As far as risk for autism, the best thing to do is go to my web page at:
http://www.autismspectrumdisorderfoundation.org/
Take the M-CHAT and the score it. This a screening instrument respected by pediatricians, autism professionals, and schools. You can use the data for a referral to an autism team at a local Children's Hospital or at a university near you. Waiting lists are often 9-12 months out so you will want to get on this right away.

Family denial is all too common. Early intervention IS everything. Do NOT allow the parents or pediatrician to take a "wait and see" approach.

I'll be happy to assist you with scoring/interpretation of the M-CHAT.

Kind regards,
James