Expert: Catherine Ridenour - 2/24/2007

Question
I  have a 5 1/2 , son who is in kindergarten.  We never really had any issues, he was always really active, busy always on the run.  He was in an in home daycare part time and preschool a few days a week.  I never had any issues, one teacher however was a little suspicious about his fine motor skills, but nothing every came from that.  Then my son started kindergarten, and that is where everything fell apart.  He can not sit still he is always fidgeting during "circle time", he has a hard time transitioning,etc.  The biggest problem for us has been "social skills", he doesnt really know how to give kids their space especially when they want to play alone...Sooo anyhow, I seriously thought it was ADHD, from everything I read.  We started him in occupational therapy in January and scheduled him to have a thorough testing with a place that specializes in children's behavior.  He met with a pediatrician, psychologist, psychiatrist, speech/language, etc for 4 hours 2 days in a row.  Then we got their diagnosis PDD-NOS (pervasive developmental disorder not otherwise specified).  It falls under the "autism" umbrella, but he is just barely making that diagnosis.  My husband and I were shocked "autism"?  We were there for ADD not autism.  Anyhow, we are getting a second opinion.  I keep reading everything I can and thinking is it that or ADHD?  We were trying to have a third child, we have a 3 year old daughter as well, and the doctors at that clinic told us we should seriously think about genetic counseling first for Fragile X syndrome, this was so upsetting.  So we are having my son tested for this chromosome.  I am addicted to reading everything on the internet and sometimes it just upsets me.  We are meeting with the school in March to discuss a possible IEP plan, however they did hint that his scores may not be low enough to get extra help.  The occupational therapist we go to , said she does not believe it is autism but ADHD, but of course she isn't a doctor.  So now we just wait for the second opinion, pray that I didnt' pass on some Fragile X chromosome to him and that we can figure something out at school so he can pay attention and LISTEN to the teacher.  It is all sooo frustrating. I dread that phone call from school.  My son is the most loving and sweet child, and I know that no matter what he has, he can't help it.  We are just trying to figure out exactly what it is, ADHD or PDD-NOS. Do you have any insight?
Grace, John's mom

Answer
Hi Grace,

It can feel devastating to receive a diagnosis of autism, however, you are fortunate to catch it so soon.

High-functioning autism and Asperger's Syndrome (primarily apparent in social functioning and sensory issues) both can look exactly like ADHD in young children. Many children are misdiagnosed and medicated for years. It is also possible for a child to have BOTH autism and ADHD. For one thing, he probably is not displaying any speech impairments which are considered a hallmark of autism. Asperger's kids, however, often have very advanced verbal skills with huge vocabularies.

I would try to relax over the diagnosis in that it is NOT a "death sentence" for his ability to learn and live a good life. Only genetic testing will reveal if Fragile X has anything to do with it. You should find out, of course, for the sake of your future babies. Regardless of the genetics, though, he clearly needs help relating to the world.

I am concerned that the school is wanting to base his IEP totally on test scores. If his social functioning is significantly impaired, he needs accomodations and help or he, his teacher and his classmates are in for a tough time. The Federal law is not based on test scores but on diagnosis. The school district has the latitude to adapt their criteria to include a child based solely on diagnosis and needs, not numbers. Don't take no for an answer.

I can tell you are researching like mad. I wish the Internet had been there for us when our daughter was the age of your son. In fact, it was in a parenting chat room that I first learned about Asperger's syndrome. She was 14 and I was at my wit's end.

So, here are some links I have found that offer information you may find helpful.

http://www.neurodiversity.com/main.html (many links to books, articles and resources)

http://www.patientcenters.com/autism/news/resources.html (books and resources)

http://www.ninds.nih.gov/disorders/asperger/asperger.htm (the definitions and government links)

http://www.autism.org/temple/meds.html (about medication)

http://www.autism.org/ (many links to information)

http://www.pnas.org/cgi/content/full/95/23/13982#B14 (About movement in infancy)

http://www.angelfire.com/pa5/as/asteachersites.html (teaching resources)

Best wishes,
Catherine