Expert: James Michael Roan - 10/24/2007

Question
QUESTION: I have had concerns about my son's development for about a year, but not concerns about possible autism until 5 months ago.  He was developing fine in all areas and hitting language milestones until his 2 year checkup.  I noticed that between 18 months and 2, he did not add on many new words, and he was definitely not combining words into phrases.  I brought up my concerns to our pediatrician at his 2 year checkup.  She wanted me to wait six months to see if his speech took off.  I waited about 2 months and decided to go back.  Things just didn't seem right to me.  When my son was 26 months, I had another baby.  The 2 year old acted as if the baby didn't exist.  I thought this was odd, and coupled with the speech issues, I began looking online.  Needless to say, the topic of autism came up immediately.  I panicked.  We were already scheduled for a speech and language screening.  I brought up my autism concerns at the screening and the therapist told us that she did not "see autism" at all.  She did diagnose him with an expressive and receptive language disorder.  She recommended EI services, since my insurance declined private speech therapy.  We have been involved in EI for several months and have recently just changed agencies for a "better fit" for my son.  Along the way, my son has been evaluated by several experts.  I have brought up my autism fears and concerns with each one.  All of them have told me that they "didn't see it"....until yesterday.  Our new EI therapist was updating my son's HELP evaluation.  At the end, she brought up an autism concern.  I asked her what made her think it is a possibility.  She told me that his speech/language delay, coupled with the fact that he exhibited some repetitive play behaviors caused her some concern.  Repetitive play is one area that I have dismissed when doing my own research.  I took repetitive play to mean an extreme fixation with one object or motion.  However, my son's therapist told me that since he has a preference for trains and other toys with wheels, and that he plays with them in the same manner (she's seen him 3 times), that could mean repetitive play.  I don't see it the same way, but I also don't want to be that parent with blinders on.  I am an educator, and have encountered this situation many times.  I also am a protector by nature and do not want to jump to any conclusions, although I realize the crucial importance of early intervention.  I'm just so confused.  Now that I have written a novel and given you my son's background, here's a look at him.
Concerns:  speech/language delay (has about a 20 word vocabulary, but does not talk to communicate); sometimes (maybe 4 total) will giggle for no apparent reason; flaps his hands when he is excited or wants to "tell" (show) us something - does not flap for an extended length of time ever, nor does he do it everyday; appears to not hear at times; does not respond to his brother's crying, but gets upset if Elmo falls down on TV - will get curious if his cousins are hurt or crying, but doesn't always try to comfort them without prompting; Loss of words - doesn't say some words he used to (or mostly, does not say them as clearly); Inconsistent eye contact - he can be very engaged at times, but at other times, eye contact seems uncomfortable for him, especially when others are talking to him; He likes to watch moving parts of toys and objects, but does not seem "obsessive" or fixated on those parts, just a preference for them.  
This is the comprehensive list I've accumulated from every "red flag" list I have found of concerns.  However, my son IS affectionate, interactive with adults and kids in social settings (no interest in babies though), loves to cuddle and be touched, uses imaginative play, communicates his wants and needs with non verbal cues, can point to objects for identification purposes and to show us he's interested in them, is physically active and adventurous, can break from a routine, and does not have major tantrums or meltdowns.  This is only a snapshot of my son, but I wanted to try and hit some of the major areas.  I should also mention that he has had chronic ear infections and we are working with an ENT to monitor his ears.  He had his adenoids out about 6 weeks ago and is sleeping much better.  I did notice that the last cold he got affected his speech.  I took him to our dr. because I suspected another ear infection.  There was fluid built up in both ears, but it was not infected.  During the time he was sick, he stopped saying any of his words that began with consonant blends (truck, train, shoes, frog, tractor).  He has replaced how he used to say those words now with simply saying the vowel sounds.  I worry that he cannot hear himself talk well enough to pronounce these words.  We see our ENT tomorrow for a follow up.  

I know this is a ton of information, and this is the first time I've become involved in one of these sites since my quest began about 5 months ago.  I know you can't diagnose, but I'm hoping you can help me know whether I should pursue further testing...we've been given such conflicting information from very intelligent, informed professionals.  I was hoping to get an outside, objective opinion.  Thanks for your time.

ANSWER: Hi Jennifer;

You are right, I cannot and do not diagnose over the Internet. The information does tend to conflict with each other. If he is on the spectrum it would obviously be on the high end. When you say, "He likes to watch moving parts of toys and objects," what do you mean exactly? Does he just line up cars rather than drive them around? Does he just spin the wheels? Does he have unusual finger movements near the outside edge of his eyes? Is he unusually interested in running water? Is he over sensitive to certain textures while eating? Will he tolerate having his hair cut? Does he point out activities or objects that interest him in an attempt to share them with you? How is his sharing behavior?

Also, first go to my web site: www.autismspectrumdisorderfoundation.org and take the M-CHAT, score it, and if he fails it take it to your pediatrician and politely demand a referral for a full assessment by professionals expert in autism spectrum disorders. DO NOT allow the pediatrician to put you off for another day. Your son has so many positive skills, it is down to either a qualitative observation and/or a full evaluation. Any qualitative and quantitative information would be useful.

Kind regards,
James


---------- FOLLOW-UP ----------

QUESTION: OK I took the M-CHAT.  #13 - Does your child imitate you? The example uses making faces I make.  While he doesn't do that, he does imitate lots of other actions.  He imitates the way we play with toys, adult behaviors (like sweeping the kitchen floor), and some interactive songs (like "Head, Shoulders, Knees and Toes".  So, I wasn't sure how to answer this, because he usually doesn't imitate funny faces, but he does smile in response to our smiles.  #22 is a definite fail.  He "zones out" sometimes, but can be snapped out of it right away.  #23, I can't recall if he does or does not do this.  If I had to say, I would say not usually.  So, I guess this one is failed too.  As expected, his scores seem borderline to me.  Does this help to give you a better picture of him?

Answer
Hi Jennifer;

He passes #13. Many children zone out. Think about #23 a little more. They are looking for evidence of your child checking your reaction to new people and new situations that may induce anxiety in the child to see if everything is ok. I remember my first Santa photo holding my granddaughter and when Santa walked in to sit withus on the sleigh she first checked back and forth between Santa and I and screamed anyway! She was looking to see if he was "safe" based on my facial expression. That's what they are looking for.

-James