Expert: Catherine Ridenour - 1/2/2006

Question
Hi Catherine,
I read your bio and it was truely inspiring. However, My husband Mark & I are very concerned and overwhelmed with what we've been experiencing with our son Aaron Michael.  He turned 4 yrs old on November 10th.  We first noticed some troublesome signs with Aaron when he was about 12 mos old and such as rocking back & forth while in a sitting down or screaming episodes.  I did go to our pediatrician whom wanted Aaron to see a Neurologist.  Quickly My husband & myself delt with comments and doubts that anything was wrong with our son by our families so we dismissed the worry.

As time went by, We noticed that Aaron although he is a loving child had a extremely bad reactions to going out in public outings and found it hard to take him places without him going into a "meltdown" and trying to bang his head.  This got worse by age two and then he would "parrot" what you say.  In other words, You ask Aaron a question and he will repeat the whole question and or anything we are speaking to him about at the time.  He still is doing this,  he does communicate on his own but we do notice that he refers to himself as "Aaron" or Aaron wants.

We notice that other children Aarons age have come further with thier communication/social skills.  Aaron's tantrums have gotten really bad and has become violent at times towards myself, Mark, his brother Ryan whom is 14 mos old and his grandparents.  He's been know to turn over a night stand or anything around him in a tantrum.

We've had to hold him until he cant scream anymore. He does'nt do this all the time but I would say on average about 6 times a month at least. We did get a referral to a child phychologist to evaluate him and she stated that he could have adhd but, It seems to us that our child has too many other symtoms that seem way out of bounds for it just to be adhd. We can't get him to make eye contact with us, When addressing Aaron, He respond back to us on his own. We have to really work with him to get him to focus on anything we are trying to make him understand.  He parrots alot and he can watch a movie remember the whole script of the movie. Aaron likes "Popeye" alot and he broke bendable doll months back and when he meets any adult or another child, He tells them "I broke Popeye" over and over. and he tells us this everyday. This does not seem like adhd to us. I call them meltdowns--have gotten alot worse and he stays in his own world alot. For some reason, He's wanting to tear his toys up all the time.  We are really worn out and worried.  We live in Loganville, Ga. and Aaron sees Dr. Deganian a very highly recommended pediatrician and he wanted Aaron evaluated asap by a Neurologist.  I do not want to go through the same stuff I've been through trying to get my son help.  I do not think my son needs just an occasional child phycologist visit.

he was originally referred because he was only 3 yrs old at the time to be observed because of his age, They were hesitant of giving meds. to calm his mind.  But My husband & I have noticed he's getting much much worse now.  Finally, His new pediatrician is also very concerned and told us that what Aaron is experiencing is not normal.

What would you suggest as a expert & a parent that knows thier child just hasn't been diagnosed properly and needs help immediately? As his mother I see what my son goes through daily and it makes me cry and worry.  I'm exhausted and feel like I'm failing him or letting him down. I'm worried that when we go for the consult that they are going to just talk to us and then make Aaron wait another month just to be evaluated by another child phychotherapist. You can be around my son for a short time and know he needs help.

Please help us know how to cut through the red tape and get him help. Please..  We do feel this is encouraging that he will be seeing a Neurologist. What can we expect? and/or what do we need to make sure he knows right off to avoid another mary-go-round and wasted time that doesn't help our son?  

I know it seems I've written a book. If you can please help us understand how the process of diagnosis needs to be handled this will greatly help Us help our son Aaron.  ALso there is a issue of school that Aaron is do to be registered this Month for this coming August for Pre-K in Walton, County public school district. We are petrified over this and need to know how to proceed with that issue?  We are not sure if Aaron will do o.k. in public school or know what to tell the school board without having a clear diagnosis.. HELP!

From Katherine & Mark--Worried Parents


Answer
I just received a message from a lady who lives in your area.  She said, "I read a question that was wrote to you titled "Looking to help our son Aaron". I would really like to get in touch with these worried parents. I am a 26 year old mother of 2 one of which was diagnosed with autism in april 2005. My son is now 3. I live in Walton county, the same county as the parents who wrote to you. I have been having alot of problems finding help and proper schooling for my son in this county. I would really like to talk to these parents since I have been threw the long process that it took to diagnose my son and I am continuing this process to find him the help he needs. Please give these parents my email address. Thank you so much for your time." jameysilva@yahoo.com  

Perhaps you can work together to get the help you need.

Catherine




Just a follow up.  Found this web site : http://www.autism-pdd.net/links/georgia.html  Resources for you in Georgia


Hi Katherine and Mark,

I hear your fear and frustration.  Take a deep breath and read on.

First, keep that neurologist appointment.  It is your best bet for an accurate diagnosis.   Your son is exhibiting many typical symptoms of an Autistic Spectrum disorder.  

To make this appointment as productive as possible, I would recommend taking some home video of Aaron (on the sly, if you can) interacting with his brother, parents and toys.  Make sure it's a standard VHS tape the Dr. can play on any VCR.  Many children like Aaron will not behave in the usual way in the neurologist's office.  They are great at doing the "look good" for short periods.  On the other hand, he may blow up to the point the doctor can't make heads or tails out of any of it.  

Also, write a clear, bulleted list of the things he's doing that concern you.  Keep the emotion out of it, if you can.  Take a list of the ages he achieved the usual developmental milestones, sitting up, walking, reaching for a toy, etc.  There will be questionaires to fill out that ask this stuff and it's hard to recall on the spot.

Thanks for reading the bio, few people seem to get all the way through it. What I did not include, for lack of space, is that the journey to success was long and arduous.

My daughter behaved much like your son at age 4.  The only difference was that she did not show echolalia (repeating what is said to her).  If anything, she was hyperverbal with an advanced vocabulary.  We did not know, at the time, this is typical of Asperger's Syndrome, one of the "high-functioning" autistic disorders. It is normal, by the way, for a child to say, "Aaron wants" rather than "I want" at that age.

She was also violent toward her younger siblings, extremely possessive of her toys and space, and jealous of any attention given by me to the other children.  She would melt down in screaming fits if pressed by too many people in public.  She was/is extremely sensitive to flourescent lights, high pitched sounds, clothing textures and food sensations.

Twenty years ago, little was known about autism beyond the child who could do nothing but rock and "flap."  Now, it is clear that the disorder is a spectrum ranging from that type of "classic" autism all the way up to individuals who are primarily affected in social functioning.

Your son may be very bright, he just can't get it out.  Many children with a spectrum disorder have auditory processing problems.  They hear but cannot assemble meaning from speech.  It hampers their ability to learn and use language.  Now-a-days, there are effective educational techniques to help him overcome this problem.

Medication may or may not be a part of his needs.  IF he also has ADHD, he will benefit from medication for it.  It is very possible to have both problems. (our daughter does) However, be assured that ADHD does NOT explain all his behavior and don't let anyone tell you otherwise. (My opinion, but it's common that these kids get misdiagnosed that way all the time)

Ok, about school.  You don't have to tell the school board anything. As soon as he is diagnosed with a learning disability, he is entitled to free services through your school districts educational service program.  He will get speech therapy and occupational therapy in a pre-school or one on one setting.  He will be entitled to an IEP (Individualized Education Program) when he enters public school.  Many autistic children are "mainstreamed" into the regular classroom but should have an aide with them the help with behavior and the special techniques he may need to learn.  As he gets older, he will need less one on one attention.  A diagnosis of a spectrum disorder is NOT a life sentence to the "special" classroom.

You mentioned comments from family and friends.  I hate to say it, but buckle your seat belt.  That is not over.  You are going to need to plow ahead with his therapy and education despite the ignorance of others.  Some of my family STILL believes that our daughter could be "normal" if she "just wanted to."  His behavior is going to be embarrasing, at times.  I believe it is very important not to hide out at home.  Pick the least busy times to go to the store and take him along.  Do expect to have problems and be prepared to leave if necessary.  

There is much I can tell you about discipline.  This is already so long, I'm going to leave that for another time.  Write back to me after you see the neurologist and I'll give you some ideas.

Here are some web sites that offer more information:

http://www.patientcenters.com/autism/news/resources.html

http://www.ninds.nih.gov/disorders/asperger/asperger.htm

http://www.autism.org/temple/meds.html

http://www.autism.org/

http://www.autismasperger.net/intro.htm

Best wishes,
Catherine