View Full Version : PLEASE GIVE ME YOUR OPINION My nephew apolgies for the length


bree
10-07-11, 09:06 PM
:( My nephew is 14 years old and is currently undergoing testing for Aspergers Syndrome. I personally have my doubts about this however there are some very real issues in particular anger, no good or close friends and extreme focus.( I am not really sure what has been done so far in tests of testing or phyc visits)

He is not ,from his mother or grandparents perspective, always easy to love (but of course they do) and he can be incredibally an difficult person at times.

:confused:My question to the people with aspergers or autism is as follows: :confused:

:confused:His parents have not informed him about what he is being tested for or why. Simply from a personal perspective I feel this is wrong partly because from the outset he is almost being disinfranchised (I think that is what I mean) from his treatment and also because in trying to lovingly be protective they will probably allienating him further and making him angrier. (at least that is how I feel I would feel in his situation). i feel HE IS BRIGHT AND WILL FIGURE IT OUT OR THINK THE WORST.

I also feel that it may make him uncooperative and fight against helping in gaining a diagnosis or treatment, FOR WHATEVER HE HAS. I also think secrecy brings shame to any diagnosis.

I have always been very fond of him and really enjoy his super dry (and at times super nasty) sense of humor. He is by far the most intelligent member of our family and we are not by any means stupid (at least I dont thinks so lol)

Any ideas or opinions would be worth (I think) knowing. Esp.if you have EXPERIENCED SIMILAR TREATMENT AS A TEENAGER? How did it make you feel? Perhaps it is the right way to go. I dont know....


In no way do I feel it is my place to interfer with my sister in laws or brothers parenting ( I would not appreciate that myself) and my intent is to be there for him if he needs someone to talk to *or even be A BIT mean too BECAUSE HE NEEDS TO VENT. And perhaps gently suggest that it may not be the best way to deal with him. Perhaps I am to honest and ADD myself and I am over identifying or just been silly or not keeping my own counsel. I really dont know please tell me (but in a nicish way if you feel you can, Im a bit over sensitive but that is my problem).

:)Hope you will respond and Thankyou. Hugs:confused:

BR549
10-07-11, 09:21 PM
I think that you are really sweet to worry and care about your nephew so much. To foresee that he might need some support.

I don't think that you are being overly sensitive at all. I think that you are trying to be proactive in ensuring that he knows he is loved, support and understood. That your nephew doesn't feel like any possible diagnosis is shameful.

Not very many aunts would go to such an extent. :)

I wish that I had some advice or words of wisdom regarding this situation. Perhaps someone who has experienced something similar will. I think that being there for him, like you are suggesting, is extremely important.

If only all relatives were more like you.:)

pechemignonne
10-07-11, 09:25 PM
I fully agree with you, bree. I don't think a 14 year-old should have the fact that he is being tested for autism hidden from him. I think it indicates that the parents find the idea of autism shameful, and I think it will lead to serious problems in the future if they keep trying to hide this from him.

I just don't know what advice to give, because people are almost never open to hearing that they are making mistakes with their kids.

I think that all you can do is try to diplomatically suggest to your sibling that he should be told, and be there for him when he finds out.

Keep being an awesome aunt!!

ginniebean
10-07-11, 10:33 PM
I agree as well.. I have no idea what they think is being accomplished


My nephew has aspergers, frankly.. I'd tell him. But that's just me :D

Unmanagable
10-07-11, 11:24 PM
I agree with the above posters.

I was at a workshop recently regarding life planning for autistic youth and adults and this "Communication Diary" idea and form was shared with us. Perhaps it could be of some help for your nephew and his parents?

Several other helpful handouts are available on Barbara Doyle's webiste as well. Might be worth checking out.

(((((((((((((((((((((HUGS))))))))))))))))))))

1691

Fortune
10-07-11, 11:39 PM
I agree with the above posters.

I am autistic, and it really annoys me when people are unwilling to come to the point, and instead try to conceal it or be subtle about it. I also found in the past few years that I had a host of health problems that my mother never bothered to tell me about, which added to my difficulties over time, and if I had explicitly known, may have improved some outcomes.

W95.CIH
10-08-11, 12:47 AM
They will probably give him an IQ test and if they don't there's no reason why you should take their diagnosis seriously. Tell him it's an IQ test, to determine intelligence. Make it sound like standard procedure, as if everyone should do it at that age. And...if they diagnose him as autistic well..you tell him but make sure you have an IQ value obtained by a professional performing a known IQ testing procedure. The IQ value is everything. The rest is just herbs and flowers. The autism diagnosis is debatable but the IQ is not. If he's smart he'll score high, if he's not he'll score low. The uncertainty of the test when done by a professional is plus or minus 1.5IQ. This means that if he was in his worst possible shape the day of the exam, the value would only go down by 1.5. Like, if he scores 93 on a good day, in his worst day he can score 90 for an average of 91.5 aka. 92.

bree
10-08-11, 06:36 AM
Thank you all so much (crying a bit now) Thank you

sighduck
10-08-11, 06:47 AM
From what i remember (which is very little) i was diagnosed ADHD in 2nd grade, my parents made a good attempt at treating it, but gave up very quickly... they didnt tell me anything of it, and just brushed it all under the carpet... now in university it is coming back to bite me (i managed going through school simply cause i was intelligent enough to get 50s and 60s without any real imput on my part, though if i think back, i always thought i was just lazy, and though i sometimes made it a goal to put in work to get grades which i was capable of, it never happened) If i had known, i wouldve been able to understand all of these things.

Fortune
10-08-11, 08:53 AM
They will probably give him an IQ test and if they don't there's no reason why you should take their diagnosis seriously. Tell him it's an IQ test, to determine intelligence. Make it sound like standard procedure, as if everyone should do it at that age. And...if they diagnose him as autistic well..you tell him but make sure you have an IQ value obtained by a professional performing a known IQ testing procedure. The IQ value is everything. The rest is just herbs and flowers. The autism diagnosis is debatable but the IQ is not. If he's smart he'll score high, if he's not he'll score low. The uncertainty of the test when done by a professional is plus or minus 1.5IQ. This means that if he was in his worst possible shape the day of the exam, the value would only go down by 1.5. Like, if he scores 93 on a good day, in his worst day he can score 90 for an average of 91.5 aka. 92.

I would argue that with cognitive disabilities, the variability can be much higher - and with autistic people, IQ tests can be quite unreliable.

Lunacie
10-08-11, 09:15 AM
I've read posts from people who feel that if you believe you may have some
disorder, you're more likely to give the kinds of responses to testing that
would confirm it. Your nephew's parents may be concerned about that.

My 9 year old granddaughter has Atypical Autism and we've never hidden
the diagnosis from her, but it's only in the last 6-8 months that she's
really becoming aware of the ways in which she's different than her class-
mates and friends.

fracturedstory
10-08-11, 07:58 PM
I had pneumonia and wasn't told about it. I was bed ridden for four months with 'a really bad cold' or glandular fever.

I self diagnosed first but before I even knew about autism my mum and my sister's boyfriend were talking about me and making the connection to autism. If they told me maybe I wouldn't have had a really awkward relationship that left with with severe anxiety and depression.

I think he should know. His reaction for knowing could be just as worse as finding out later or it could make things better. You never know. I think if I was diagnosed when I was younger I would completely deny it. I was a bit ODD back then.

They will probably give him an IQ test and if they don't there's no reason why you should take their diagnosis seriously. Tell him it's an IQ test, to determine intelligence. Make it sound like standard procedure, as if everyone should do it at that age. And...if they diagnose him as autistic well..you tell him but make sure you have an IQ value obtained by a professional performing a known IQ testing procedure. The IQ value is everything. The rest is just herbs and flowers. The autism diagnosis is debatable but the IQ is not. If he's smart he'll score high, if he's not he'll score low. The uncertainty of the test when done by a professional is plus or minus 1.5IQ. This means that if he was in his worst possible shape the day of the exam, the value would only go down by 1.5. Like, if he scores 93 on a good day, in his worst day he can score 90 for an average of 91.5 aka. 92.

When it has come to some people with autism and IQ tests on a bad day they can get as low as 60 and on good days as high as +130.
Stress in autism can almost be debilitating. An IQ test tests performance and when someone with autism is stressed out they are likely to not say a word and become extremely defiant. The last thing they want to do is sit down and do a test.

cathy2
10-12-11, 01:41 AM
It is hard as a parent to know what to tell your child when you are having them accessed, with my son's I have spoke with them openly about the things they are good at and some of the things they have trouble with, I talk about everyone being different and that some children are really good at somethings and not others.

My younger son H (8) is being accessed for aspergers/adhd. I havent told him what he is being accessed for as I don't want him to worry about something he may not even have.

Last night we were reading "all cats have aspergers" and my elder son said does H have aspergers? I said I am not sure, and explained that we all have traits and different ways of doing things, I said he may have and if he does then thats OK, I went over some of the things that we all do differently and said it would be a pretty boring world if we were all the same.

It was quite funny earlier that day when my parents cat was on my Dad's lap and H said all cats have aspergers and I said why do you say that, he said because they only like to do things there way. At that stage we hadnt read the book. I thought it was quite a good example.

Being a parent is the most difficult Job that you do, there are so many times when you make chioces and hope that they are the right ones, Your nephews parents may have valid reasons for not discussing it with him, they may just not know how to go about it, I think alot depends on the child and there reaction to it, I think the best thing is to be open about things and talk with your children about there strenghts and weakness.

As my son's paed said to me when I was saying I didn't want to give him a label, he said its not about a label, its about finding out his strenghts and weaknesses to better help him cope with school and life.