Expert: Catherine Ridenour - 11/12/2008

Question
QUESTION: Dear Ms. Catherine,
Thank you for this helpful service!
My son, Isaac, age 8 has been diagnosed with PDD NOS.  My husband does not embrace this.  When we had the testing done, my husband & I answered a few pages of questions regarding Isaac & Isaac went with a person for around 45 minutes to test/play games & be observed.  From this, the neurologist determined that Isaac has PDD NOS.  My intuition knew there was something unique about my boy. My husband thinks the testing ws too vague & just does not believe that there is anything "wrong" with our son.  My husband does admit that Isaac is very strong-willed, the most stubborn child he's every met & says he's an only child spoiled brat that has problems socially & is immature. My husband has been very disappointed in Isaac's progress & immaturity.  I have a few pages of journaling/documentation that I've done on Isaac's behavior & reactions, etc..  I was going to attach those pages but didn't know how to do so (& you may not be interested in reading them.....) I thought they would give you a better "picture" of Isaac on a daily basis.  The neurologist said Isaac is high functioning.  Isaac is high energy & can be talkative.  I have homeschooled him but we are planning to send him to a private school for next school year so he can have some positive peer pressure.  I have also observed that he does better with someone else as his authority.  Many days he does not want to cooperate & throws tantrums with me so we don't get "official" school done but we do work on character training. We stared Isaac in Karate & he likes the instructor & cooperates really well for him.  Is there a way to tell if my son does indeed have something on the autism spectrum or if it's just behavior/attitude issues?   I've done plenty of research & believe my son does have something on the autism spectrum but my husband will not accept it.  Any advice on this?  Thank you so much!!  My son can be so tender & precious & then rude, untouchable & fiesty all in the same hour.  
Rachel, a mom from Indiana

ANSWER: Hi Rachel,

It is hard for parents to accept a diagnosis like this. PDD-NOS is such a non-specific seeming conglomerate it does not seem real. I have found that many children who initially are labeled this way turn out to have Asperger's syndrome or high-functioning autism but at the time of diagnosis, they lack a key behavior to nail it down. The important thing to remember is that his Individual Education Plan should focus on his needs, not the technicalities of the label.

Here are a few things to share with your husband:

1. Developmental Delay = immaturity. All that "immature" means is that he's not "there yet" in comparison to his peers. That does not mean he will never get "there." Many of these children are thought to have an underdeveloped or slow-maturing nervous system. He needs more time.

2. He needs his Dad's approval not just his love. Try to get Dad to focus on positive behavior, however small. If Isaac responds properly to an instruction like "Please, pick up your coat." He should receive a verbal reward. "Thank you."

3. Help your husband find activities they can enjoy together. Fishing, bug collecting, watching sports, something other dads do with their sons and of which he can talk with pride. Not every kid is cut out to be a linebacker, autistic or not.  

My advice on emotional maturity is that these kids are usually about 3 years behind their peers. An eight year old is going to function about like a five year old, emotionally. By the time he's 12, he'll be 8 and by the time he's 21, he'll be 18. By the time he's 30, no one will notice the difference, probably. I've seen this pattern in my own daughter and in other youngsters like her.

The quick change nature of his behavior is due to the above and the fact that he probably has very little idea how his behavior affects others. This is not about exposure but about what is called "theory of mind." These children have no inborn understanding that others have thoughts and feelings. If he's angry, he lashes out. If he feels lovey, he's all cuddles. This self-centered way of being is not a conscious, willful act. He has no other skills, yet.

He behaves well in karate for several reasons. One is that the instructor is not his parent. He has no "issues" with him. (All these kids have trouble separating where they end and Mom/Dad begins. This is NOT the same as being "spoiled.") The agenda is very clear. We are here to do karate. Everyone is doing the same thing. It engages his body as well as his mind (kinesthetic learning). The class is limited in time frame with a clear beginning and end.

Private school is a good idea. Be sure to education yourself on the rights and responsibilities of IEP's. Here is a link to find more:
http://www.ed.gov/parents/needs/speced/iepguide/index.html (official government guide to the IEP)

Catch him doing things right. Ignore minor errors. Pick your battles. Find his passion and use it to engage him in educational activities. If he's fixated on insects, draw them, write about them, collect them, research them...

None of us ever gives birth to the "perfect" child. What a boring world it would be if we were all alike. Many experts agree that both Thomas Edison and Albert Einstein would have been diagnosed as "on spectrum" if they had lived today. You never know who he will grow to be.

Best wishes,
Catherine


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

QUESTION: Thank you for your quick response! It touches me that you will take the time to share so much - it's so helpful & encouraging.  It really blessed me!!  I do have a follow-up question: Is there a way to know if the diagnosis given is accurate or if my son may just have attitude/behaviour issues?  Testing for autism is so vague, at least that's been our experience. Do you have a suggestion of how we can know for sure if Isaac does have something on the autsim spectrum?  What would you recomment we do?  Or is it really unnecessary to have to know......  Thanks again, Catherine!!  This is an awesome free service!!!

Answer
Hi again,

Those who test for spectrum disorders are VERY careful not to give the diagnosis unless they are sure. They know the consequences of getting it wrong. I know it seems a loose diagnostic regimen, but these experts have learned to spot the subtle signs due to long experience with many children. After raising a daughter on spectrum, I can spot it clear across the room.

We all went to school with kids who were not labeled (who knew, at the time?) but who had the behaviors we now know are part of autistic spectrum disorders. These poor kids were shunned by their peers, fell farther and farther behind and eventually dropped out or turned to criminal behavior to survive.

Thank goodness we now recognize these problems in young children and know how to intervene. He will receive special services to help him compensate for his lack of social skills and language deficits. Even if you can't recognize it now, his receptive language ability is probably sub-par. This hidden disability becomes a bigger problem as educational and social demands increase.

I would get him into school and see what his teachers think. If he's the quiet type, they may think he's fine, for a while. If the diagnosis is correct, his production efforts will show his problems. Do pay attention to what happens on the playground as well. Other kids have radar for "odd" peers and they can be most unkind.

Look at the diagnosis as an insurance policy. You're ahead of the game. He is entitled to free and appropriate services NOW. So many parents fight for many years to get a diagnosis as their child struggles and suffers.

If he catches up and functions at a grade-level, you have every right to discontinue special education services.

Denial is a normal thing. Some of us take more time to deal with bad news than others. Give Dad the time he needs to grieve the son he thought he had and accept the one he got. And, yes, there is a grief process involved. Also, some people feel someone has to be at fault for something like this. This is nobody's fault which means there is no target at which Dad can release his anger. Men don't do "stuck" very well.

This diagnosis is not the end of the world. High functioning kids can do very well in this world. Remember, you are your son's best advocate. Keep up the good work.

Best wishes,
Catherine