My Son Is Fooling The Experts - Please Help

[tina_72]

My husband and I are concerned that my son, who is now 2, has autism.  
We took him to UCSF to be evaluated by 2 of the best evaluators around.
Here were some of the concerns we told them about as they observed our son...

Hand flapping (when excited)
Toe walking (when excited) - My brother n law (47) and niece (13) also do this (not when excited but generally) - genetic trait?
Razzing of tongue and likes to touch tongue with finger or play with teeth/saliva
Spinning of trucks/cart wheels while up side down- Fascination with all kinds of movement-
ceiling fans, sprinklers, lights turning on and off, clocks with pendulum, the meter box dial on the side of our house, etc.
Lack of pragmatic speech - does not ask for "ma ma" but rather pulls at my leg
Does not request milk, juice, water, snack, etc.
Anxiety when around peers in classroom
Deterioration of eye contact - he does make eye contact when he wants to see
us make an animal sound or to see if we think something is funny the way he does.  
Eye contact is usually less than a second or two.  He may gaze at us if we sing to him.
He does not point at things or wave to people - He does bring pictures to us to show us that
Grandma colored with him.  The doctors told us this was more important than pointing to things.
He does point to things in books, just not out in the world.
He runs to us for hugs when he needs comfort, but pushes away when we try to hug him.
Limited dietary intake
He seems to talk to himself often
He can sit and look at books for more than 5 or 10 minutes at a time, but will move
on to other interests
He went through a period where he did not respond to his name.  Lately, we have seen some
improvement.

We were told our son has s"peech delay."  We were relieved at first (for about a half hour, actually).  On the drive home we felt as if we received the wrong diagnosis.  They told us that the reason they did not give my son the Autism label is because too many of his behaviors fell under one category of the DSM-IV.  Other parts of the DSM-IV did not apply they told us because of his age (ie. social play/interaction with peers).  They have asked us to return to UCSF for a second evaluation because we are so concerned that they have diagnosed him incorrectly.  

My question is...how can my son have speech delay? I know he can say, "Ma-ma" because he says it mechanically/repetitively every time I read this baby book to him that ends in the word, "Ma-ma" yet he never calls me Ma-ma to get what he needs.

He has also mastered the alphabet, self-taught, and can say numbers up to 20.  He is fascinated by alpabet and numbers.  He can say or recognize with a animal sound almost any animal you can think of, including urials.  A week or so agao he said the word, "octagon."  When I told the doctor this she said, "He is just a whiz."  

These doctors are supposed to be the best around, but I don't think they got it right.  What do you think?

Thank You,
Concerned, Observant, Ma-ma With Common Sense

[Myrna Libby, Ph.D., BCBA]

You certainly seem to have valid concerns regarding the information and diagnosis you have been given.  Do follow-up with the second round.  Regardles of who you are seeing, you should feel comfortable making sure that the diagnosis and the reasons for it are fully explained to you.  You should not find yourself walking away confused about the diagnosis.  If you still have concerns I would encourage you to ask them who can provide a second opinion so that you find a diagnostician you trust and feel comfortable with.

[angelinamarina]

Hi,
sounds a lot like my child who is now 4.  when she was 2 she could do 48 piece puzzles and knew the alphabet but could not stand hugs and was sort of lost.  she does not really have a speech delay, but a delay in other areas.  At 3 she was dx with PDD-NOS  "pervasive development disorder, not otherwise specificed" because she did not fit nicely into any category.  She did not have above normal/normal language skills which would have given her the asperger's dx i think.
I would go with your gut.  Forget those docs and go to another.  If I had it to do over again, i woudl forget the developmental pediatrician and take her straight to a DAN! doctor.  (defeat autism now)
It will work out, but do follow your gut.  You know your child better than anyone else.  And, you know that time is important here, and if you get treatment sooner than later it could make a huge difference.
-Angi

[portuguese mom]

Go with your gut. Get a second opinion so that you can get as much help for him as possible and early.  I recommend Alex Peterson for an evaluation.  He is with Oakland Children's Hospital Psychology Department. He might have a private practice also.  Call the hospital and ask for him.  Good luck.

[louloumum]

My son is almost three and sounds a lot like yours.  See my posting dated: 17 Dec. My son will be assessed in February.  Dont wait any longer - from my understanding your son does not have to meet all the criteria for PDD-NOS.  If I am told that my son does not have PDD-NOS, I think I will well up in emotions either way because if he does not have it then what does he have.  All these symptoms cant possibly relate only to a speech disorder  - can they?  I think we should have more trust with our instincts and keep seeking until all your concerns are confirmed to your satisfaction.  Good luck.

[crayons]

I understand how you feel. It's really disillusioning to expect a very scientific, thorough evaluation and to instead have your observations and concerns dismissed. I had the same thing happen to me, and came to conclusion I had to trust my observations more than those of the doctors, (and yet not let any of the doctors know that I did not consider their opinions to be divinely inspired ;-) because I am the person who observes my child day in and day out. The doctors usually see your child for 45 minutes, and their diagnoses are not nearly as objective as they'd like everyone to believe.

Unfortunately, I think that happens a lot with children younger than about 4 years old because the problems haven't come into clear enough focus and can be confused with many other things. So, instead of being very thorough and meticulous with their diagnoses, many of the "experts" tend to lapse into making off the cuff decisions. Sometimes, their status is what causes them to be so arrogant, so sometimes you are better off with someone younger or not necessarily considered to be an expert.

They think they can just glance at a child and know what their diagnosis should be, despite the fact that none of the illnesses are exactly diagnosed. Behavioral, developmental disorders are all a matter of subjective opinion about how far a person strays into the continuum of "disordered" rather than normal.

[barbsbit]

I am merely a mom of an Autistic 7 yr old but this sounds a lot like my initial response of evaluators. Jus ttoo young to say for sure. I knew early on but it is not good for doctors to label a child with Autism or anythign else unless professional opinion is convinced. Though it is frustrating to not knwo for sure, it is only fair for the professional and the child to be more certain. I had the diagnoses by age 4 so hang in there. I have a son serving in the army as well and he did this same behavior and is now fine! Just was a bit odd in peer relations and accepting affection, he outgrew it and is the most loving affectionate adult son. Thriving, though is never goign to be the socila butterfly of the groups, he has friends and is well liked. I am so glad I did not have him diagnosed or his dream to serve in the military woudl have never happened. Not having the diagnoses on yrou son wil nto stop you from early intervention. You can still do so much for him with  this concern at home or with private therapy. God Bless.

[LukeL]

Just to point one thing out, there is a difference in language devlopment. There is knowing the words and repeating them, and knowing what they mean and how to use them in context. It seems to me, he is still just mimicing and not understanding really what he is saying. Which I am sure you know can be a sign of autism.

As for toe walking neuromuscular problems could be looked into, especially if he had delays in ohter milestones like sitting, crawling, walking etc.