To diagnose or not diagnose?

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Registered: 08-01-2003
To diagnose or not diagnose?
10
Tue, 10-03-2006 - 12:48pm

I have a son (9yro) who I believe very well may be an 'Aspie'... in fact I'm convinced that *I* was/am an 'Aspie' and am *thrilled* to have a name for 'it'. However, in my estimation his 'problem' is fairly mild... he is 'just like me' and while I had a horrid time in school I've gotten through life without any medication or therapy. I've just 'learned to play their game'... kwim?

Anyway... before the idea of Aspergers was ever even introduced to me my husband and I decided to homeschool our children. So while I 'see' Aspergers in my son... he hasn't really 'suffered' for being different like I did. I catch myself teaching him to get along like I did and yet let him be himself... but I wonder if he would do better in life if he had more 'help' than I had. (Or had more 'help' than another Aspie to teach him how to 'play' normal... ya know?)

Some people had told me that they wouldn't worry about 'labeling' him since we don't have to 'fight' the school system like so many parents... and in a way I agree. But I also know what a relief the very *idea* of a 'name' for what was 'wrong' with me was... I know he feels 'different' too sometimes and I wonder if the label would be a help or a hinderance.

Any thoughts?

Kristy

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Registered: 04-11-2003
Tue, 10-03-2006 - 1:47pm

hmmm What a good question.

I don't think I would have sought a AS diagnosis if my ds weren't in public school. There were some times we needed outside help like OT & PT but I believe we could have gotten those without the AS lable. We haven't sought outside help for social skills. He gets that at school. I don't know if you'd need a lable for that.

If you want to just tell him about AS and get him some books you could do that without a formal dx. We got our ds Blue Bottle Mystery: An Asperger Adventure & Of Mice and Aliens: An Asperger Adventure by Kathy Hoopmann. He really enjoyed them both.

Samantha, Mom to Kyle 11yrs AS

Samantha
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Registered: 06-25-2003
Tue, 10-03-2006 - 3:34pm

Hi Kristy,


Welcome!

-Paula

visit my blog at www.onesickmother.com
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Registered: 03-27-2003
Tue, 10-03-2006 - 4:46pm

Our diagnosis (aspergers) was entirely due to school issues. If the school year hadn't fallen apart so drastically as it did last year, I doubt I would have ever even thought to find a label for my daughter. We desperately needed the diagnosis for her though otherwise we never would have made the progress in school like we have this year. WHEW!!

Having said that though, I am really glad we did pursue the diagnosis because it really gave me more insight to what is going on with my kiddo and has allowed me to research things a little easier.

At the same time though, if you have a good handle on things and are getting along fine, I probably wouldn't worry about it. In regards to feeling different, I don't know if a label would help or not but it sort of has with my daughter. She has had those same feelings of being different and has more than once come to me and said she thought she was weird and crazy. When we got the diagnosis, she kind of liked having a name for it so now she loves to tell people about it. :)

Jill



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Mom to Erin (19) and Haley (10yo Asp
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Registered: 07-12-2005
Tue, 10-03-2006 - 4:58pm

Such a tough question!

Speaking as a sister homeschooler I do understand the 'don't worry/don't dx' idea and agree with it on a certain level.

My oldest ASD DD is more severe than AS and thus had been dx'd prior to school age. Her dx was wrong at the time, but she had an IEP ect. She was (and still is) one of those kids who needs more help than we'll ever be able to give her on our own. I think the question you need to concentrate on answering is whether or not he will need extra help. Depending on where you live getting help from the ps district when you homeschool can be a bear. It also depends on whether or not you use a private school as an umbrella or criterion. We use a private criterion and they make great use of the IEP to help get our DD enrolled in private classes/thereaies inour area, but not every oversight is like that. Some don't think thier enrollees should have anything to do with IEPs, etc, on the grounds that they're already getting the most tailored education they possibly can.

But then, I look at my 6yo DD (AS) and wonder how much good it did to get her dx'd. In her case it wasn't hard since her older sister was already dx'd with Kanner's and her dad was dx'd with Asperger's. It helped insomuch as we could be sure of what direction to take her education at home, what to concentrate on, etc. But, we've never used her dx to get her services because she does pretty good with just the things she gets from us.

Have you brought it up with his ped doc? If his ped doc is on board with getting him tested then I would deffinately think about it. Just so you have an answer either way, and if he is AS he'll have the dx as a foundation to get serves he may need later on. But if it looks like it's going to be fight then I would think twice about it. If your son's doing well right now with out it I don't know if it would be worth loosing the harmony in your life to get the dx.

Like I said, tough question. I think my official suggestion would be to give it some thought. Research how much help a dx would get him versus how much of a pain it would be to go through the process of getting it. Talk to others, listen to their stories, especially the stories of other homeschoolers. Mull it over and don't make any hasty decisions. That way, when you do make a decision, either way, you can move forward knowing you gave it the consideration the situation deserved.

~SG_1Niner

APOV on Autism

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Registered: 06-03-2006
Tue, 10-03-2006 - 6:29pm
Having a name, helped me understand how my son was different, it helped me to know what to expect from him.Then I was able to use this board and other resources to make better choices for him.Son knows that his brain works differently than other people's brains. Even though the dx did not get him services in school, I believe it bought him some time and understanding from the new school. I did not tell most family/neighbors about the dx. Telling the school did not get special services. I think the most important result of the dx was that as a mother I knew something was not right & the dx helped me feel more comfortable in accepting his differences. I no longer listen to people when they tell me son needs more discipline or if they had him for a week - he'd be straightenedout.Now I feel as though I make the right choices for us.
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Registered: 03-26-2003
Tue, 10-03-2006 - 6:38pm

Well this is a tough one. On the one hand it may help him understand who he is, on the other it may not be neccessary at this time.

At his age and with your reasons, I would keep an open dialogue with him and let him be part of the process at this time. If he begins to notice he is different or begins to get frustrated let him be part of the decision of whether or not to get a dx. Not that he gets the final decision, you do, but at least let him give his input.

Self determination is really important for all kids, particularly ones with needs as they get closer to approaching adulthood. This is something that is going to affect the rest of his life so while you make the final decision he will be apart of his life and what Aspergers means to him.

I would also make sure to present Asperger type material and any information on differences in a positive note. You may want to do some disability and differences type teaching with him. Showing him how all people are PEOPLE first, not thier differences. Kids are not a sum of thier differences (which it can seem like when you are reading reports or even when we post here because that is what this board is about) but first and foremost they are an individual. So I would help him see that side of differences and then if he does get a diagnosis it will be a more positive type experience.

Renee

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Wed, 10-04-2006 - 2:51pm

I wasn't going to get a diagnosis for my son, but I decided to do it so that it's documented and he's protected in some way. A diagnosis would come in handy for your son if he decides to attend college...on the off chance he needs services there. There are some universities who offer extensive services to Aspies to help organize their studies, etc...

For my son, I wanted the diagnosis in place if there should ever be a military draft. Yeah, my son is only 8 years old...but I know that he should never serve in the armed forces. If his diagnosis was never documented, it would be a harder case to prove at age 18 and facing a draft.

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Registered: 03-22-2006
Wed, 10-11-2006 - 2:42am

I too pondered this. I don't want him to have this label and I'm sure we don't need extra services, he's home schooled as well.

I hate the thought of going through the system. I hate that with every single appointment not one professional I've spoken with has actually asked if it was ok to talk about my son with him in the room. It's like he's a lab rat or something, not really a little person with feelings. I hate that the most but have gotten used to it to some degree. He seems fairly oblivious at this point, he's 5 and half.

My dh though really wanted a diagnosis. I still see it as dh needing proof because it's always been me who insists there is something up.

The process has taken us a year and a half now, we saw a ped last fall who figured all we needed to do was distract him away from his obsessions and repetitive behaviour. I knew it was more than that. My dh thought we should follow his advice until we spent a few months trying to distract him. We gave up and have totally discounted everything the ped said. Then we went back to the gp and I asked for a referral to be tested ASD and Tourette's, he said those conditions were very rare so it was unlikely. I was seething, he's seen the video of my son's full body repetitive behaviour.

He did finally agree to a referral to someone else, the gp thought the children’s psychiatrist was a good start, it took 4 months to get in. The psychiatrist we saw was the first doctor to listen to me and take me seriously. He agreed with me and I actually cried with relief. I was so scared we would be told it was all in my head. We have finally been referred to an autism assessment clinic for thorough testing. The psych thought it could be Tourette's and/or Asperger’s

It will be good to know but getting this diagnosis is taking years off my life! All the waiting (we may be assessed in Nov if not, Jan or Feb), and appointments and then in the end he may not get a dx. Sometimes, I still think we would have been better off not having a dx and have all this energy spent more productively. Another thing I hate about the label is autism is officially categorized as a mental illness, which I don't agree with one bit.

One good thing about this is I can stop blaming myself for his at times unusual behaviour. Knowing he is not nt would explain a lot and I would be vindicated in a way. It will explain why he acts light years behind his peers emotionally but is far a head in other ways. I'm hoping a dx will shed some light, anyway.

Me rambling again. I hope this has helped in some way. Thank you for asking the question, answering has helped me sort it out for myself. Annette

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Registered: 09-09-2005
Wed, 10-11-2006 - 8:21am

Where did you hear that autism is a mental illness?

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Wed, 10-11-2006 - 12:15pm

I was describing the process I went through in deciding whether to seek a dx or not. I am not sure if officially it's catagorized as a mental illness. But illness or disorder, it's the same to me. I don't believe it's really a disorder either, society isn't accepting of differences that's the disorder.

I'm not having much trouble coming to a place of acceptance in relation to my son's possible diagnosis. I know he's 'unusual' I know the medical community would consider him to be not neurotypcially normal. And I am extremely grateful for the catagory of Asperger's otherwise I wouldn't know what my own differences are all about. But I'm not comfortable saddling him with a label, not everyone we know will have to know about his dx. He's doing just fine right now without the label because (imo) he's not in school.

My dh is a huge reason we are seeking a dx, he's the one insisting and I'm sure once he has it he will be even more accepting of our son. He is fabulous with him now but I think he just needs to know. He is so nt it's not even funny where as my family is so not, it's harder for him to grasp it. He doesn't get half as frustrated as I do but he also doesn't understand that our ds can't just take up baseball, soccer, skating and skiing like other kids and he shouldn't push him. A dx will give him what he needs to understand this I hope.

Autism is far from the end of the world. I embrace my usual behaviours and I've accepted my son's. When answering doctor's questions I have a hard time telling them what unusual behaviours he has because I've spent the last 5.5 years just loving my son and accepting him for who he is. To me he's not unusual he just is who he is, not like the kid next day certainly. I am frustrated at times just like I'm sure most parents of nt kids are. My frustrations often aren't about the same issues though as parents with nt kids so I feel comfortable here.

I hope I'm welcome. Annette