Aspies For Freedom

Hi all,
I am mom to 3 spectrum kids.  I initially balked at the use of the word "autism" to describe my then-6-year-old (now 12-year-old) son.  He was precocious in many ways and the behaviors that were being described didn't seem so very odd to me. I even told my husband that if he was autistic then I must be autistic, too.  As I learned more this truth became inescapable.  During my childhood, though, kids like me were just nerds or geeks or weirdos or etc.  I did OK without a diagnosis, quite well, in fact.

The public schools categorized my children as autistic for service provision.  They did not need diagnoses to get services through the county.  I live in the US, which may be an important note since it seems many on this board are in other countries, predominantly the UK.  The question is: what is the point of getting diagnoses for the children?  I have agonized over whether it is worth the financial investment.  I've read all over this forum today and can tell that it is important to so many people, but I just don't get it. We would not be doing anything differently than we are.

Comments / opinions / personal experiences?  Thank you.

Welcome to AFF, Grizelda.
I don't know how to answer your question.  Maybe if some reason comes up where a diagnosis would be of clear benefit you could do it then.

Hi Grizelda,

And Welcome to AFF!  I am not sure if I am understanding your question?  However, the way I am interpreting your question is that your son has been diagnosed on the Autistic spectrum and you are wondering what's the point in the diagnosis...

Well, If I am understanding your question correctly why was your son  diagnoses in the first place?   Was he having trouble with socializing, bonding with kids, and having a tough time in school?  If so, then a diganosis is MOST important because he will better understand himself and get the necessary help he deserves to become a succesful adult.

You say you did well in life as do a lot of undiagnosed aspie, however there are a lot who don't do so well and I believe a formal diagnosis can open the doors to better opportunities...Oh, and by the way I am from the U.S. as well!!!!

I hope I understood your question and again welcome

Good Luck, Kalo

My fault, I hit the wrong button.  Heh.

energeia, that's what seems logical to me, but I have often found that something can be logical and yet somehow not "right."  I want to do what is right for the children.

kalo, none of my children has been diagnosed.  They were categorized by the schools for services.  This is the gist of the dialog:

School: "Um, your kid is autistic."
Me: "No, he isn't.  He just hears a different drummer, like his mother."
School: "Yeah, that drummer happens to be called 'autism.'"
Me: "No, no, no, look how smart he is."
School: "Autism is different from intelligence."
Me: "Good grief.  I'll do this myself."

I homeschooled him for several years because I did not want their obsession with his behaviors to keep him from achieving at the level he was capable.  He said he was ready to do the classroom thing for 5th grade and they put him in an autism classroom, but pulled him out in under a month because he did not need the supports they wanted to provide.  He finished out the year with what amounted to a personal secretary and was recommended for honors classes.  He said he wanted to come back home because he learns more and has more free time. I can't argue with that, and his social opportunities are better amongst homeschoolers.  We did 6th grade at home.  Here's the thing: he has never been officially diagnosed by a neuropsychologist.

Same for the other children, only less of it since they are younger.  This year they will all be homeschooled.  It is the first time that all of them have been home and I approach it with both anticipation and trepidation.

I cannot see how our childrearing would change if we went to the trouble and expense of getting official diagnoses.  We've had some pretty involved talks about being different and how that isn't necessarily a bad thing.  We have moved gingerly toward using the word "autism" to discuss issues because of the stigma (thank you, media mugs), though in the past year I have found that referring to the kids as "spectrum kids" often opens the door to educating some one.  When I say "autism" they think they already know what it is and are quick to offer their sympathy (grrrrr). I definitely do not want the kids to get the idea that being autistic means that they cannot do something, and most people seem to have that idea.

So is a diagnosis a help or a hindrance? Is it neither, utterly pointless?  It isn't as if we are unaware of the issues here.  I've lived it and so has my hubby.  Although realizing the neurological difference has helped me to understand many of the challenges I've had, having it officially diagnosed does not make the frustrating any less frustrating.  Diagnosed or undiagnosed, the reality of adapting and coping in the social/political realities of this world does not change.

My but how I have gone on.  One might suspect an obsession.  *wink*

Homeschooling three kids--wow!   You must have a lot of energy.

Right--so you're struggling with decisions that could either help or hurt this process.  And so you want to make the right choices.

My opinion, fwiw, is that if your kids develop self-esteem along with enough relevant life-coping skills to function independently when they need to, then all will hopefully be well. So...a question is:  how would a diagnosis assist this process or how would it impede it?  

I think I'm glad that I grew up "pre-asperger's".

This is the first year that all three have been home.  We'll see how it goes.

I question whether I would have achieved  what I achieved if I'd had the label.  I don't know, I certainly had labels and maybe having a clinical one is better. The world is a different place now so my experiences are not as germane to the decision as I would like.  I guess I want perspective that isn't "pre-aspergers."  

This is the second board where the response to my inquiry is not exactly overwhelming. I thought if anyone had experiences to share they'd be here.

And so.

Well, I like the site anyway.

There are various threads scattered around on the topic of whether people are glad or sorry that they received an official diagnosis.  There isn't a consistent answer.

Knowing is better than not knowing.  If we know we can learn to adapt, or at least learn to accept.  I'm glad to know, it puts things in a sensical framework.

I'm asking myself the same question. Last year I had a huge break-down, burn-out, you name it. And I had never experienced it this bad. I'm still recovering. I've decided to want a diagnosis for myself. Because it was not my first breakdown, I want to understand more of myself. I want to know my strenghts and weaknesses and learn to use the first better and to cope with the latter. I don't want any other help. I'm not unhappy with who I am.

My daughter is on a waitinglist too.
But I do have my doubts about that. She's doing fine on her primary school. She's happy. But in a year or three she'll go to the next school. And I'm not sure she'll manage there. Her primary school is great. They don't like labels for children, just treat them as individuals. But the 'middle' school won't have this attitude to children. Its a learning factory. If she was diagnosed there would be 'evidence' that she has to be treated as a person. If I was sure 'middle' schools were as personal and caring about their pupils as her primary school is I would not get her diagnosed I think.

Now she's on this waitinglist, and I still have my doubts. She on the other hand wants to be diagnosed. Because she is happy in school, but she does feel different and would like to know more about herself.

For me the question is only do I want it. Because the diagnosis is free. Indeed, it depends on the country your in.