New with questions

iVillage Member
Registered: 04-03-2004
New with questions
4
Mon, 08-29-2005 - 1:38pm

Hi all -

I have a wonderful almost 4 year old son. When he was younger a good friend of ours (with the educational background to back it up) mentioned that he seemed to have a lot of the classic Asperger symptoms and my husband and I did some very basic research on Asperger's and dismissed the idea mainly based on the information that Asperger kids had serious social issues (reading body language, making friends, etc.) Our son is and always has been extremely social (will talk to anyone and everyone) has friends, plays well, reads non verbal cues, etc.

His symptoms(is that the right term?) seem to be high intelligence, obsession with something (trains from day one), very verbal (talking at 6 months) formal speech pattern and sensory issues. His only obvious sensory issue is with noises. Anything loud drives him crazy and anything with what we term a "whirring" noise (hair dryer, vacuum, mixer, blender, etc.)is unbearable for him though he has gotten much better about dealing with it.

We have recently moved to a different state and seen a new pediatrician. A few weeks ago he had a cold that turned into pneumonia and the doctor sent a nebulizer home to use. As you can imagine it sent my son into a total panic. After fighting him at home for a few hours we took him to the pedi's office where it took 4 of us to hold him down and we were still not able to get the mask on him (or anywhere near him for that matter). After we had settled down some the doctor started talking to us about her suspicion of Aspergers based on what she has observed over the last few months. She also is the parent of an Aspergers child so seemed to be more familiar with the signs. Her feeling (and ours) is that if he does have Aspergers it is probably a mild form that doesn't interfere too much with "normal" daily life. She is encouraging us to get him "tested" and have an offical diagnosis before he starts kindergartern.

We have dealt with the intelligence "issue" by putting him in a part time Montessori preschool since before he was two. This was a great solution for us because it allowed him access to "academic" work (sounds ridiculous when talking about a 2 year old)of the older kids but kept him with kids his own age at the same time. They have never identified any type of learning issue (doesn't mean there isn't one).

We are wondering what the benefits and risks of having an official diagnosis are and what the process is. If it is truly mild like we beleive will it do him more harm than good to have it in his record? If it mainly doesn't affect daily life do we really need to do it?

I am home with him and wouldn't have it any other way - I love it! But I also find it very tiring from a mental perspective. I just never imagined I would have to have hour long detailed technical conversations with a 3 year old (who just spent 45 minutes explaining to me how a cylinder box works). Our friends/family don't seem to understand how tiring it can be and think we am complaining about nothing and we should be grateful to have such a smart kid. They just can't see any down side to the situation.

Thanks for reading all this. Any advice, thoughts, funny stories, etc. would be greatly appreciated.

Thanks!

Lisa

iVillage Member
Registered: 06-25-2003
Mon, 08-29-2005 - 4:18pm

Hi Lisa,

Good to have you with us. I know some people caution against a "label", but my feeling is that avoiding a label doen not mean one isn't there. Worst case scenario: It could mean issues, no help.

My DD, 5 is very mild also, I could have 'gotten away' with not getting her any services, and she would have functioned in a regular ed preschool. However *functioned* is very different than *thrived* and with a lot of support last year, we saw her thrive in preschool. Many, many people commented on the changes in her over the course of a year. Most were other parents who had no clue about her special needs, they just thought she had 'grown up' an awful lot in a year! (someone told me she had "blossomed"! LOL a lot of hard work went into that blossoming!).

The other argument for having Ryan(?) evaluated, is that it will give you a benchmark of where he is at in all functional areas, and maybe highight any issues of which you may not be aware. For example, you mention that he can talk the hind legs off a donkey (I'm paraphrasing). How is his receptive language? Formal testing will benchmark this and highlight any big gaps or areas of concern. Also, if the school district do the testing, they will then put together a plan to address any issues, and give him any additional support he may need.

It could be that he doesn't need much or indeed any help now, but sometimes we see kids whose issues seem to emerge more as they get older and it may be worth getting on the radar, so to speak, for a faster turnaround time if you need help further down the line, KWIM?

Last thought: the nebuliser incident could possibly be an indicator that his sensory issues go beyond audio sensitivity (and is a health and safety concern in itself). An Occupational Therapist can help you with sensory issues, and could make life easier for him. This type of therapy is best started young, while the brain is still elastic.

OK I'm lecturing (sorry) I'll stop. I hope this helps. Please feel free to stick around, trawl through the old posts and ask as many questions as you need to. This is a great board for information and support.

-Paula
Mother to Peter, 7 (HFA) and Siobhan (DD), 5, officially "at risk for Aspergers Syndrome"

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-26-2003
Mon, 08-29-2005 - 5:19pm

I will tell you our experience on this exact issue. Our oldest daughter was always a bit delayed. She was diagnosed delayed at 3 and on the spectrum at 4. Her younger brother, Mike, was a whole lot like what you mentioned. Autism had been brought up to us on a number of occasions due to sensory and behavioral issues. However, he was very social. Always outgoing at parks etc. Now he would end up driving other kids crazy and had to have things his way, but he was very outgoing with peers. So we said he couldn't possibly be autistic. He was not outgoing with adults though and in fact had severe stranger anxiety. Almost every doctors appt was as you mentioned.

But he was social so he COULDN"T be autism spectrum.

Well as he got older and didn't have any support, he got worse and worse. He began to withdraw socially because he never learned how to do it properly and had enough failures under his belt to really frustrate him. We finally had him diagnosed at 7.

In the past 2 years we have been playing catchup and it has been a rough go. He is more autistic than my older daughter who was diagnosed first. He was put full time into a special day class last year and now in 4th I am crossing my fingers we will be able to mainstream him. If not he will need to attend a special needs school for kids like him but we are finally making real progress. I can't help but think where he would be now if we had not been in denial then.

Come to find out, Aspie's can be social the thing is they are pretty bad at it. But when they are younger less is expected socially. Often it isn't until they are older that the differences and struggles really become apparent. If he is still successful, catch him now with social skills help and hopefully he will never be not successful.

Renee

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iVillage Member
Registered: 05-26-2000
Tue, 08-30-2005 - 10:40am

Howdy Lisa, and welcome from one newbie to another!! Sounds like we have a very similar route that got us to this board! Mine was my boss's wife who teaches SEd at my son's new school. Your Ryan sounds a bit like my Josh. We spent the first 4 1/2 years of his life not being able to eat in restaraunts or go to certain places due to the noise levels creating a meltdown. Thankfully crowds and music seem to be resolving, although the vaccuum still sends him running with hands over ears. Socially they may differ a bit cause although Josh WANTS to be social, I feel he has problems understanding that others don't always want to talk about Star Wars all of the time. LOL Now, of course I'm new to all of this too, but I would say since Ryan has a year before kindergarten to go ahead and look into an evaluation. Josh's first day of kindergarten was yesterday, and Asperger's was only brought up/thought of about a week ago. His teacher is aware of ongoing sensory issues, but I really really wish we had started prior to kindergarten so that we would be able to advocate better and have a better understanding about his needs, and how he would react in given kindergarten situations and have a plan made with the school. You are mom, and you know Ryan best and if you have concerns it can't hurt to have him evaluated. I have always had a "gut" concern that we didn't push with the pediatrician, and in hindsight I wish we had. I think for us it was more of a we don't really have to worry about it yet, kindergarten is ______years away, we'll see if the teacher says anything then. Gosh, I didn't intend on writing a book LOL. I'm certainly no expert, but I hope our experience thus far helps a bit in making your decision.

Take care,
Heather

iVillage Member
Registered: 02-24-2004
Tue, 08-30-2005 - 3:34pm

Hi Lisa,

I just wanted to welcome you to the board! My youngest, Nathan, was dx'd when he was 5 as HFA. What I did was have him evaluated at school and then was given the name of a neuropsychologist by the school district. They had him down as "developmentally delayed" and provided speech therapy for him. The actual medical dx was, of course, up to me and my dh. I did pursue this, because I wanted to know for sure what we were dealing with.

Nathan is pretty well behaved and he's not aggressive, just real quirky!! LOL I really just wanted to get to know my son better and learn how to relate to him, as well as how to "teach" him things.

Nathan's school would not have provided ESY (extended school year) for Nathan, if he were listed as developmentally delayed. But he DID qualify because we had a dx for autism. It's something that you would have to look into for your school district. After being on this board for over a year now, I have learned that all schools and all states are different. There even may be other things that your son would qualify for.....without you even knowing. So it's somethink to look into!

HTH,

Michelle