Acceptance of a Label

[ML]

I have something I could use some help with. As many of you know early testing showed that manster did not have AS/Autism Spectrum Disorders (ASD). This was when he was 8 and the Autism Reseach hospital gave him a diagnosis of ADHD, Social Anxiety and Generalized Anxiety Disorder (GAD) oh and tics. We accepted that for a couple years before maturity and research on my part clearly indicated this was inaccurate. It's a long story but we've never had a second official evaluation to give us the label. To get it I will have to subject manster to another battery of tests at this same hospital which is the only one our insurance covers. I'm sure they would confirm it at this point but I'm not sure I want to put him through it again. The reason I say that is because manster does not want to accept it himself. He wants no part of special accommodations and gets angry and upset if I suggest them.

For many years I have talked about aspergers and pointed out people we know with the diagnosis that he likes. He knows what it is but he refuses to believe it has anything to do with him. I have had this same discussion with a young man at work that I'm sure is AS, he's actually a poster child for it. When I first talked about it with him he thought I might be right and went to some meet ups and because these others were way less functioning than him he refused to associated with them or the diagnosis. He told me he would rather be perceived as wierd than to have a label that would remove all doubt that he was different.

So do I let manster figure it out on his own or do I insist upon another evaluation for confirmation? He already has a 504 and so far it's been enough but with the upcoming challenges of middle school what if it isn't?

Any suggestions appreciated.

 

[BusynMember]

You know what? You can only use the official diagnosis anyway. His diagnosis EXPLAINS everything that Aspergers is from social anxiety to ADHD, which is almost always a part of Autism Spectrum Disorders (ASD). To me, if the person is doing well enough with what he has, let it go. If he starts to falter in school, you can re-evaluate him, but I don't know that he will get more accommodations for Aspergers if he is mainstreamed in all his classes.

While I advocate getting a label to help with school and adulthood (which is still in the future for you), if things are stable now I would just let it go if it were me. My son got his diagnosis. at eleven and until then his interventions were enough. He did not have another evaluation until just a few months ago and that was because he is turning eighteen soon and needs to continue services. We needed to make sure he was good to go.

Just my .02

 

[keista]

If your son is resistant then I agree with MWM. If it's an Autism Spectrum Disorders (ASD) now, when he's 28 and can't find a job and need SSI it will still be an Autism Spectrum Disorders (ASD) (Hopefully this will not be the case, but if it is, it is.)

I didn't tell my son he had a label until he entered middle school. This was after he hit a wall of depression and we had to address that with medications. Son always knew he was different but didn't know it had a name. He was devastated to find out, but I assured him that it changes nothing except the fact that now he had a name for it. He got over it and accepted it quickly. Shortly after, he asked me if he was allowed to tell ppl that he was an Aspie. Sure, I said. Turns out he was having some communication issue with ppl on various forums. When he became aware that he offended someone, or said something "wrong" he's use it as a precursor for an apology and ask for an explanation. 9 times out of 10 the other party or parties would "get it", help him understand, and then move on. He was getting true peer to peer training and self advocating.

In your case, Manster wants to do it on his own - let him. If he won't be cooperative with the testing, it's not going to give you accurate results anyway. (Son's school evaluations are all over the place - one score puts him at such a low functioning rating that looking at the paper, you would think he was comatose)

Honestly, sounds like a "typical guy" thing - they don't read the instructions, they won't stop and ask for direction, etc. Funny, I recall an article about Autism being described as an "extreme male personality" A label is the closest we can get to an instruction manual. If Manster is getting by without it, then it is OK to not pursue it. Some day, he may change his mind, and you can go from there.

 

[timer lady]

ML, it took the tweedles years to learn about & accept their diagnosis's. kt is just learning the symptoms of mania. wm is seeing how the attachment/abandonment issues are interfering with family life.

Around your Manster's age we backed off on various therapies to work on skills ~ nothing but skills. It's okay to take a break from the diagnosis stuff & trying to get your difficult child to "accept" while working on his daily skills for a while.

by the way, sweetie, this isn't a "label" ~ it's a valid diagnosis. If we here use that term then others less understanding will do so as well.

 

[Star*]

Mark Dude down as another kid who didn't 'want' a lable. Heck I din't want one for hime either - but it did help us get funding for certain things. Certainly has NOT helped him get Disability SSI. So now he's asking me "Well what good was a lable Mom?" lol (and we both can't figure it out either) EXCEPT for the lack of funds from GOOD OLD UNCLE SAM.

I think the testing needs to be done as needed to keep up the diagnosis and paperwork. As far as looking at Manster and saying "You are a Vulcan, from the planet Vulcan and you will always be different with pointy ears and think logically unlike other children and everything I say will be most illogical to you because I am human?" Yeah well - to him? He just wants to be a kid for while because some day he's going to grow up, and realize - he really IS a kid that is different and he knows that day is coming - he's a smart kid. He's got Aspergers he's not mentally lacking - Know what I mean?? So you tell him - You know what Manster? YOU do what you have to do, and I'll do what I've gotta do to keep things rolling - and we'll just be fine. I'd let him decide when he's accepting of his diagnosis.

Hugs = and I love what Timer said !

 

[Malika]

Star, your post had me laughing at 8.24 in the morning with J bouncing around on the sofas next to me...

 

[Allan-Matlem]

Labels are useful in getting accomodations and resources for a kid. Labels are not very good in helping us solve problems or being informed on the kids lacking skills.

Dr Ross Greene does not like dxs , he prefers to work with the Alsup check list and work with the kid in a collaborative way to help the kid acquire skills by addressing his concerns and solving problems

http://www.livesinthebalance.org/sites/default/files/ALSUP.rev_.4-21-11.pdf

Allan

 

[LittleDudesMom]

I agree with MWM.

I can tell you that my difficult child actually had a very "above age" understanding of his diagnosis's when things first began to get bad. He was 7. From his perspective, his struggles have always been with him. While your son might try very hard to appear the same because he doesn't want anyone to know, my son tries really hard because he knows he has to. Does that make sense?

Either way our kids look at it, they are working had to keep up with their peers. I think you play the waiting game. We actually made very, very few changes in middle school and actually took some accommodations away because difficult child either didn't need them anymore or didn't want them (small group testing he didn't want is one example I remember from middle school - he wanted to test like he had all year, with his class - when it came down to our state testing, he wanted to do the same - I had to email the principal an "emergency" letter to attach to his IEP giving permission for the IEP "small group testing" accommodation not to be followed).

You are one to keep on top of things - I say just wait.

Sharon

 

[ML]

Thanks you guys. If there actually was funding for accommodations in our state (which is 48 out of 50 in terms of supports in this area) I might be pushing harder.

How funny LDM that you said that about taking giving permission to take a way an accommodation. Manster threw a fit in 5th grade that his teacher told him he had extra time on testing because he felt I didn't believe in him. He was so angry that I didn't have more confidence in him. There was no talking him out of it and truly, extra time isn't something he needs. If anything he needs to slow down; he's fast and sloppy lol. So I sent the permission slip to disallow it.

Thank you everyone for weighing in on this. It's something that has been heavy on my heart. I suppose I'll play the waiting game and not try to force him out of his denial for now and hope that with time he comes to accept this. I have felt in a way like I'm failing him but not insisting he accept this. I try so hard to explain about this diagnosis as it applies to my stepsister and others we know. He knows that to have AS is to have special gifts and intelligence. I really pump up the good stuff. I don't understand it. If I could find a reason/diagnosis to explain something that summed up why I felt a certain way I would jump at it.

So for now the waiting game it is. I appreciate the support very much.

 

[Steely]

Yes, I agree with the others. He is too young to really grasp the diagnosis. Matt is just now able to say he is bipolar. In some ways I think it is good to just let him live his life, and then if and when he starts to ask why he feels different or is different then you can bring up AS.