Topic : Asperger's Syndrome

 My 4 year old son is in the process of being avaluated based on some developmental disorders. Despite his limitations, I see cases of those living with PDD and highly funtioning autism conditions, and it just isn't my boy. Am I in denial? The evaluators who say he is testing in the autistic range, also see things about him that just don't make sense, yet I feel they will be assigning an incorrect or incomplete lable to his condition next wednesday when thay make their final diagnosis.

He is authentically joyful, creative, a wonderful story teller (making up the most incredible stories behind observations he makes in daily life), he is very affectionate, and tested very well on intellegence and congitive development.

His issues include a significant speech delay, focusing heavily on mechanical processes to figure them out, prefering parallel play to interactive play most of the time, and some behavioral issues like panicing over strange things, refusing to leave a certain location or friends house when he wants to stay or do something there, and other issues. He is heavy on elaborate routines. Group guided activities that involve sitting and listening seem to frighten him.  However, even within the scope of his issues, he is not consistent. He will be fine a lot of the time. He likes interacting heavily with certain friends (seems like when any girls are around he is more standoffish). He has self improved in the area of speech tremendously. Many of his past behavioral issues have evolved. the rest are relatively new and seem to be in the process of evolving.

I do recognize he has issues, but does this sound like PDD or aspergers to all of you much more learned parents? I do want help for him, but I wonder if they are missing something (like maybe something around his traumatic birth circumstances), and worry over the consequences of having him labled incorrectly by the Baltimore School system.

We had taken our 4 yr old son to his pediatrician for his 4 yr checkup and discussed with him some unusual behaviors that our son was displaying. We also mentioned our worry about sending him to school next yr. We really couldn't imagine him being in kindergarten and doing well. He referred us to a behavioral health dr and we have been seeing him for over 5 mths now. We also had him looked at by our early childhood program in our school district. The school district has labeled him as having Aspergers syndrome. Our dr is not ready to give him an actual dx right now. He thinks it might be pervasive behavior disorder. We dont' know who we should believe or agree with. He is always focused on one thing (power rangers). He also has a fascination with Chris Farley movies and watches them and repeats lines from his movies all the time. He is aggressive with our older son and our animals. He loves the animals but it is seems like he can hardly contain himself from hitting them. He makes loud noises which have been described as ticks. He has a impossible time following more than one step directions. He hates noise and crowds. He usually throws up almost everyday because he will see or smell something that he thinks is gross. I feel like he is so misunderstood. Ppl get annoyed by his behavior and comment on what a handful he is. They tell us they cant imagine having to deal with him all day every day. He is our son and we want what is best for him. Getting a correct dx is very important to us. I just don't know if he has Aspergers, ADD, ADHD, or some other behavior disorder. What should we do for him? He is currently going to school in the Early childhood program 4 days a week half days and he is seeing the behavioral health dr. once a week for an hour.

 

      I have a 10 year old boy with Asperger's, so almost all of these posts have had some familiar parts to them. I am just really glad to hear the positive posts and the encouragement to eachother. As it has been said many times, our family life is far from easy. There are many times that I feel like there is no way I am capable of helping my son, but then, I take a deep breath and think that there is no way I am going to let this guy down. I am trying to learn as much as I can and we were fortunate enough to have found a place here in Colorado called JFK center for autism and learning disabilities. They are absolutely amazing. I read a lot of books and have a great support system of friends and family, so I am very blessed.

     I am especially happy to be able to see all of the special qualities my son has that other kids don't. He is going to start middle school next year and I have already visited to check it out. Thanks to many warnings from materials that I have read from people that have grown up with an AS diagnosis, I am looking for anything that will keep my son from having to endure bullying etc.. The title is not so great if someone is sensitive but the book is great, it is called Freaks, Geeks and Asperger's Syndrome by a 13 y/o with Asperger's. It gave me a completely different perspective. The author is great.

     Anyway bless you all and thank you for sharing your experiences. It is just good to know that we are not alone. A special thanks to those that have posted that have AS or Asperger's. You all have faced adversity with great courage and I hope you continue to plow the path for all of our kids that are coming up. Thank you so much.

     I heard a quote the other day that was from a Zen Buddhist speaker and no matter what your spiritual preference is I want to share it because it really lifted me up. "You can't stop the waves but you can learn how to serf."  How many things can that be applied to.

Robin from Colorado

    

I just wanted to let you know that I know exactly what you are going through. Our son is 4 and has already be labeled Aspergers by our school district. I can't help but worry about whether this is for their own benefit or for his. For each child they get in their program they get funding and I wonder if they are trying to make him fit a syndrome just to get the funding they seem to so desperately need. He is seeing a behavioral health dr. and he isn't willing to give us a dx yet. He said it takes time to see the whole picture. My son sounds an awful lot like yours. He seems to have alot of the same likes and dislikes when it comes to play and such. He was a late talker (didn't say much until he was over two yrs old). At the time we were told it was because he had chronic ear infections from birth on up. He seems to struggle in social settings. He gets easily distracted by his surroundings. I just wanted to let you know that you are not alone in your struggle to do right for you child. I just wish there was a test that could tell us for sure whether or not they have Aspergers. Take care and keep us updated about what they tell you regarding your son and his dx.

     I would start by seeking out a center or clinic that specializes in diagnosing Autism spectrum disorders. I thought that they would probably just give everyone that comes in a diagnosis but they really do some specific testing and it is not harmful to your son. It is tiring for all of you but not invasive. They are also much better equipped to give you info for help, resources etc..Many people will not understand and will say things that really hurt but chalk it up to them just not "getting it" and focus on how to take care of your son and your family. I had a teacher tell me they had been teaching for 29 years and had never had a child disturb them as much as my son did. I didn' know whether to cry or give her a good scolding.I started with mental health as my Dr suggested and the lady literally looked through the diagnostic book while she was talkinfg to my son and he was 5. She had him diagnosed with all types of mental illnesses and I had to really make sure they removed it from his medical records. So keep your head up. Frequently your state, city, or county will have an Autism society or organization with people that can help find a place for diagnosis and treatment. Best of luck.

Robin from Colorado

Personally it does sound similar to Aspergers but at a high functionsing level. I would encourage you to get another opionion to put your mind at ease. It also sounds like he has some sensory issues. Which will possibly come and go at times which is normal depending on what's going on inside of him at the time. Which can be very confusing for you.

 

Do I think your in denial? No.....I think you love your son! And your doing the best you can do. Get the second opionin and don't be afraid of labels. You should be more afraid of if you don't get him the help he needs and of things for him getting worse. You sound like a great mom. Hang in there.

 

Mary's Mommy

 

Angela 

We are planning on taking him to the University of MN as soon as we can get our insurance all squared away. Our dr. wants him to be evaluated in the ADHD clinic and then the Autism clinic. It takes a few months to get an appt there so hopefully we can get in and get a dx before he is to start kindergarten. He is super high energy and is constantly running around, getting in to things and making loud and disturbing noises. I can't decide whether I believe the Aspergers dx or not. I sometimes think that he might just have ADHD but there are certain areas that seem to fit the Asperger dx. I am confused and guess I don't know what to believe. I just want to get a definite answer so I can move forward with helping him to be the best person he can be.

It does sound similarly frustrating, and I hope you get answers. I feel like Autism diagnosis' are on the rise and might be a little overly diagnosed. I'm not sure why, but I wish my team were as patient as yours. They are required by law to diagnose within 60 days and have admitted that he's not a perfect fit for "Autism" Still, I think that on Wednesday, that is what they will say he is, as they have to say something. It's just that all sorts of red flags popped up when they told me that he tested in that range, but, also said: "I'd feel a lot more comfortable if he wasn't testing so high in the intellegence and cognitive development areas." I feel very alone and your message helped a lot. I will check back on on Wednesday to let you know what the final diagnosis is if I am not too heartbroken to respond.

I will definitely get him help no matter what. I wish the word didn't scare me. In my heart of hearts it just does'nt seem like a good fit. Even with highly functioning Aspergers, isn't there a bit of a disconnect in the affection and eye contact area? I will get a second opinion (would even if I agreed with the diagnosis). I try not to be afraid of "lables" But I worry about what might happen if he were mislabled. This is the school system that is diagnosing him, what kind of record will follow him around and what will that mean as far as his options go? He scored very high on intellegence. Anyway, not looking for answers here. Just venting. Your comments were very sweet and made touching. I do love my son very much. I just don't see him the same way so many other people do.

I will definitely get him help no matter what. I wish the word didn't scare me. In my heart of hearts it just does'nt seem like a good fit. Even with highly functioning Aspergers, isn't there a bit of a disconnect in the affection and eye contact area? I will get a second opinion (would even if I agreed with the diagnosis). I try not to be afraid of "lables" But I worry about what might happen if he were mislabled. This is the school system that is diagnosing him, what kind of record will follow him around and what will that mean as far as his options go? He scored very high on intellegence. Anyway, not looking for answers here. Just venting. Your comments were very sweet and touching. I do love my son very much. I just don't see him the same way so many other people do.