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megamum
Butterfly
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25 Aug 2011, 5:22 am

Hi, I'm Claire, I'm new

My son is 9 and has aspergers. He's a grumpy wee thing at times. However I don't see him as diabled in any way. To my mind he has a different mind, not an inferior or broken mind. The way his brain works seems just as valid, just a bit different.

Now I understand that I not only have a son with aspergers, but also work in the field (I work in special ed and have a specialism in autism) but I am ashamed to say that I never really thought much about the language we use for autism until it came to discussing it with my son. I knew he was on the spectrum since about the age of 3, but his diagnosis is recent because my husband took a long time to come to terms with the idea and to agree to diagnostic assessment. My boy is bright and I couldn't take him along to a psychiatrist without giving him some idea of what he was there for. And at that point I was a bit stuck. I didn't want to tell him 'We're off too see if you have a disorder, sweetheart'. I ended up telling he we wanted to see if he was an 'asperger person'. I didn't even want to say 'if you have asperger syndrome', because it's not like it's something he has, to me it's the core of his being, who he is, the way he is. There isn't a non-aspergery boy struggling to get out from under the shackles of autism. There is a boy who struggles with social understanding and skills, and we can teach him, but he'll still have those processing differences at brain level that make him the wonderful quirky maddening frustrating smart boy that he is. And whilst I'd be very pleased if he was able to greet people appropriately, I don't think it would be a better thing if he didn't have that amazing categorising ability or memory skills or logic.

What I'm trying to say is that I don't see that I have a diabled child. In fact I find it quite offensive. I don't like the term 'autism spectrum disorder for the same reasons. Who are we NTs to decide that someone else's way of doingthings is disordered, just because it's not the same as ours? What I do have is a boy with some amazing strengths, and some challenges that we need to work on.

How did you share the diagnosis with your children? It has been an amazingly positive thing for our son to know he is an aspie, but I wonder if that 's because I have never expressed it to him as a tragic or bad thing, only as an axplanation for what he finds hard and a signpost for others. He does know that some people think aspergers is a disorder, so I haven't been entirely rose tinted.

I have to say he does have challenging behaviours at times, lots of meltdowns and tantrums but usually perfectly understandable if you can see the context. It's not like he's a really malleable and therefore 'non-disabled' aspie. He's hard work, but he just isn't 'broken'. He is who he is.

Anyone else out there think like me? :D

Claire



Last edited by megamum on 25 Aug 2011, 9:05 am, edited 1 time in total.

Lucywlf
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25 Aug 2011, 5:42 am

Thank you for recognizing that Aspergers people are just different, not disordered.

You could tell him that this is a doctor who can help him with his issues with other people.

You might want to show him the children's section of this forum. I know it helped me as an adult come to terms with my issues; it might help him learn more about himself.

These are just suggestions; feel free to get a second opinion.

Nobody wants to believe their child has any sort of issues; I blamed myself for years before I finally realized that the Autism diagnosis the school had given my sons was correct. *hugs* Bless all three of you and good luck.



megamum
Butterfly
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25 Aug 2011, 6:00 am

Thanks Lucy. I had thought of letting him look at the children's section but the friendship thread for his age group is very quiet, which I think might discourage him a bit!

I think you are right about not wanting our children to have issues. I think if we HAD had him diagnosed at 4 I'd have felt very sad about it, but perhaps I have been through a long processing period in the meantime! He does now have a diagnosis BTW. I think now that it's not that I don't want him to have issues - I can clearly see that he does have issues - his particular difficulty is in doing 'smalltalk', where he simply opts out and ignores people who try to engage him in 'chat', which is going to have to be worked on or he'll upset a lot of people! I don't THINK I'm in denial of his issues, just in considering his issues part of autism as a disorder or disability rather than part of autism as his personality that gives additional challenges in certain areas.

Gah, maybe I'm talking rubbish :lol:

Claire



Last edited by megamum on 25 Aug 2011, 9:06 am, edited 1 time in total.

Infoseeker
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25 Aug 2011, 8:16 am

My parents kept it a secret till recently in college; I randomly heard about it as a mention by my siblings and approached him last year on it. However, my father says he regrets it because he thinks I'm using it as an excuse to hold myself back; which is not true. He told me about it, because I am 24 and still struggling as an undergrad academically and socially; his logic is flawed and he won't see it because i didn't know till now. He always thought I would grow out of it. Seriously thinks I am holding myself back; which is true, but not because of the aspergers, but because of this long term depression that they deny to help me challenge the baby steps out of it.
Everyday he scolds me for a good half an hour, throwing all undone tasks at me at once (making me feel hated and useless; even though there may be a chance he may not be thinking that way but is thinking 'I may shame him into acting') , and then proceeds at the end of all that with personal question to find ways to improve myself; which I am way too scared to answer by that point. He approaches everything at once every-time with his recognizable anger and doesn't realize understand I can be so unresponsive.......eventually my mother will approach me over one thing (playing the good cop role I guess lol) and at-least one task will be moved foreword.

In my case, I would unfairly assume an earlier approach would have helped me socially (and eventually translate academically). Unfair because its past and there is no way to prove it true.

Though as you said with your son being smart, till the end of high-school I was not behind anyone to be considered in the traditional sense autistic. However, I was in a very small high-school that had just began. before college, classes are smaller and you knew everyone in your class. I was in an environment that completely covered my symptoms from showing and being approached/dealt-with/challenged. I always studied in groups and could approach people to study in groups. I was good with the environment ready to guide me.
Also, in elementary/middle/high school I still had the natural high of discovery that peaked my interest in every class. Things are supposed to start get boring and serious in high-school, I never felt that. In college I started noticing myself getting more mature. Pondering what I am doing in these classes for, this is not what I intend as something I want later, and what are with these strange people; it all kicked in with that late start of maturity awareness at undergrad. I was still thinking of myself in the third person for the first few years of undergrad; I remember my siblings always getting annoyed with it.


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Last edited by Infoseeker on 25 Aug 2011, 2:46 pm, edited 3 times in total.

DW_a_mom
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25 Aug 2011, 10:42 am

When we started assessment, it was pretty clear to my son that he was different, so we told him it was all about figuring out how and why, so that the teachers would know how to teach him. Everyone has their gifts and burdens, it just turns out that his bundle has a name, and using that name gives others some idea how to best work with him.

The common phraseology with younger kids is, " your brain works differently."

That is and has been our approach. A name that can be useful in conveying information about his brain works differently.

The debilitating co-morbid we never really pulled any punches about. The dyspraxia/hypotonia/hyper-mobility sucks and he's got to work harder to get to some of his goals and produce written work than other kids.

Info seeker, it sounds like your parents have issues themselves. They also got stuck figuring out the road before all the good information was out there. I am sorry they are being the way they are. It sounds really destructive, actually.


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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


Ilka
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25 Aug 2011, 9:17 pm

megamum wrote:
How did you share the diagnosis with your children? It has been an amazingly positive thing for our son to know he is an aspie, but I wonder if that 's because I have never expressed it to him as a tragic or bad thing, only as an axplanation for what he finds hard and a signpost for others. He does know that some people think aspergers is a disorder, so I haven't been entirely rose tinted.

He's hard work, but he just isn't 'broken'. He is who he is. Anyone else out there think like me?


We shared the diagnosis with our child AFTER we got the official diagnosis. We already knew she had Asperger's, because her therapist told us, but she referred us to a neurologist for the formal diagonosis, so I had time to read and learn about Asperger's before talking to her. I also used a possitive approach. We are always honest with our kid, so we told her it was something wired differently in her brain, that she will always be an Aspie because it does not have a cure, but that her therapist would help her get better in those things that were difficult for her, like writing, concentrating, and controlling her emotions. At the begining she was very happy, but later she found out by herself the down side of being an Aspie. I was trying to minimize it, but my husband told me that was not correct and that if I continued trying to do that she would stop trusting me. Now she does not feel so happy about being an Aspie. She does not have friends and notice that people find her ackward and are not patient with her, and that makes her sad.

I dont think my kid is broken or wrong. I think she received a wonderful gift. But her wonderful gift also has a price. My main concern is that she is very talented in many things, but she lacks the discipline to set her mind on to something. As she finds things are too easy for her she does not want to work hard to achieve her goals, and we are very scared if she does not change that she will probably not be able to achieve her goal of become a scientist, which requires a lot of hard work.



lovelyboy
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25 Aug 2011, 11:13 pm

This might be old news for some of you :oops: , but I came accross a book on the internet, that looks great, to share the news with kids...It's called: "All cats have Asperger syndrome"...I can't remember the author now. This little book has more than 60 pages of full colour pictures of adorable cats, giving one or two sentences describing AS on each page, for example "cats don't like being hugged, they choose to hug some one"....Unfortunately I had to order it and needs to wait between 4-6 weeks for it! :(