Aspergers...the diagnosis going away?

BusynMember

Well-Known Member
thank you, Marg :)

Some people are not old enough to remember how it was. There was never a time without labels...they were just uglier.
 

TerryJ2

Well-Known Member
Well put.

I would rather have been labeled correctly "Learning disabled, depression, anxiety disorder" than been called "mental" and "stupid." It also would have helped if I had gotten help in school so that I may have been able to go to college and fulfill my own dreams (yes, I had many lofty goals). I would have liked to have understood why I felt so sad sometimes that I couldn't even smile (for an entire year i would not smile at anybody) or why I freaked out at school so badly that I screamed in terror and got called "mental." I would have liked therapy, maybe even low-key medication so that every morning I didn't throw up in fear before school.

I guess my point is, we always had labels. It's just that the old ones were not well meaning at all and did not even try to explain why some children were "different." And the "interventions" were administered by clueless teachers and mean kids who didn't understand us. I prefer it this way. I know it isn't perfect yet, but it's a big improvement over what used to be.
 

Marguerite

Active Member
Not that long ago, either... difficult child 3 was called some awful names, including a very derogatory word for "homosexual" coupled with the word "retard". Kids would ride around the streets calling this out to him. When he first heard this, he didn't know what it was and he used the same term back at the kids who used it on him. That was when I got a letter home from the teacher - "difficult child 3 has to learn to not call other kids [insert F***retard term] because it will not win him any friends. He needs to be taught to not use such language."

I replied with, "You have known us well for years, know our family and our home, you know he would not hear any words like that here. There is only one other place he heard these words - at school, in your class. And knowing difficult child 3, you can begin by interrogating the kid he applied the term to, as the one most likely to have first used that term towards difficult child 3. The inclusion of 'retard' in the insult - it is a term that has been used specifically targetting difficult child 3. So he is the victim here, not the instigator."

I never got a response - I strongly suspect that the kid who was the recipient of that insult (and therefore the initial user of the term towards difficult child 3) was the teacher's own son. Very unhealthy situation...

Marg
 

Malika

Well-Known Member
These are all good points.
There is also a (I believe legitimate) fear that if you put a label on a child you can create a perception of abnormality where there previously was none. And not wanting to do that is just about not wanting a child to be stigmatised. It's part of my own personal quandary. No teacher or childminder my son has had has thought he was anything other than a very active, mischievous little boy. I know something different... but obviously it is tempting to draw a veil over that and just go with their perception, not wanting him to be marginalised.
Don't know whether that makes sense!
 

BusynMember

Well-Known Member
Makes A LOT of sense and, unless it becomes necessary, never tell anyone...lol! BUT...if people start thinking, "Wow, you have a BAD boy. He is a BRAT. YOU raised him wrong..." Well, then they will start labeling him for you and that's when it gets touchy. He is still young. Perhaps he will not get to the point where you start hearing those self-made labels that others give. Take it one day at a time.

We don't tell anyone who doesn't need to know that Sonic is on the autism spectrum. Most people just think he's extremely shy and extremely compliant and well behaved...some have said ADHD due to his sometimes poor attention span. If they don't need to know, they don't know unless Sonic wants to tell, and I doubt he does. HOWEVER, if Sonic was acting up in school and starting to be labeled "bad" and being threatened with an alternative school for emotionally disturbed children, well, then that is when I would talk to certain people in the community and try to explain. For us, we feel it is best to inform the school, however they are not allowed to spread his diagnosis to anybody else. They could get into trouble for this.

You have many years to ponder this dilemma. You don't know yet how your little boy is going to be when he is older. I tell people as little as possible, unless they are dearly trusted friends or understanding family. It is simply none of their business.

I am sorry I got cross with you the other day.
 

Snowenne

New Member
I am actually one of those people that don't want them to take it out. My son has Aspergers. Yet his diagnosis is Autism Spectrum Disorders (ASD) High Functioning. If they put the final diagnosis as Aspergers I would be completley screwed. Me and thousands of others. Im in Canada. The government here doesnt think aspergers is a problem. LOL ya kidding me. Take my son for a week and tell me that hes not a problem. I think it needs to stay in for people like me so we can get the same help we would if he was diagnosed with autism.
 

Marguerite

Active Member
Snowenne, they're talking about taking out Asperger's and leaving it all as autism. Are you concerned that it could mean that all those with an autism diagnosis risk being labelled as Aspies in disguise? I think you could easily fight that.

chriscrosses - we were part of a food sensitivity research project, in Sydney, back in 2004. The project was run through a pediatric immunology department of a major Sydney hospital and was looking at possible connections between autism and food sensitivity. Their initial findings were thta about 30% of those with a diagnosis on the autism spectrum somewhere, found that there was some improvement after food sensitivities were identified and removed from the child's diet. These included not just artificial additives but also naturally occurring chemicals including gluten, salicylates, amines, glutamates, lactose etc. The elimination diet needed to assess these was labelled by husband as the "food-free diet". it's nasty, it is not sustainable but it did give us valuable information. Notably, that in difficult child 3's case, the only food chemical he reacts to is caffeine. And we had already known that.
The delight in our boy when he was told it was time to challenge (ie "you can eat it now, and we'll see if you can tolerate it") was amazing to behold. His delight on discovering that he had no problem with his favourites - even better. He lost weight on that diet, at a time when he should have been gaining normally. But we are glad we went through that process, there was a chance and it was worth it for that.

On the subject of telling/not telling people about the autism diagnosis - we've been open about it. A lot of people would not accept what we told them, however. They continued to try to tell us there was nothing wrong, that it was just bad parenting. Or that I was catastrophising. One local doctor was very loud in his criticism of the diagnosis, as if I was the one who had labelled my child and not the various specialist medical teams. That doctor has now left general practice and is now practicing cosmetic surgery (which requires no qualifications here, other than GP). Who knows? Maybe if he keeps practicing, he might get competent at it one day...

Back to difficult child 3 - he would tell people openly about his autism. From his point of view, it is a gift. We did go through a phase where a well-meaning idiot friend of mine prayed with difficult child 3 that his autism would be healed - I set her straight, said it was sending him nasty mixed messages to not accept himself as he is. Autism brings gifts, even as it causes other difficulties. In our house we allow stims, we allow coping strategies and allow idiosyncrasies. This is home, home is supposed to be a safe comforting place. So when the boys wanted to swing in a string hammock, completely wrapped up in it, that was okay. When they set up a giant cardboard box in the living room and climbed inside it to watch TV through a tiny window they cut in the side of the box, that was okay. We explored weighted vests, we explored other interests and sensory stimuli. In so doing, we have discovered surprising gifts and encouraged them. The boys have a capacity to concentrate intensely on something small and simple - we have encouraged that also.

Right now I think difficult child 3 is not so happy with his autism - he is very frustrated right now. I'm hoping his medications are the issue, but it will take a few months to sort it out. But overall - in our home, autism is how you are, and it is valued.

Marg
 

TerryJ2

Well-Known Member
Just to play devil's advocate (and because it occurred to me after reading several of these notes), I only told one s-i-l about difficult child after his diagnosis. When Christmas time came, I decided I had to tell my little sister, because we were staying at her house. She asked, "Why didn't you tell me b4?"
"Because I didn't want people to treat him differently."
"Well, we already knew he was different ..."
"You did?"
"Uh, yeah ... no big deal, but at least now we know what we're dealing with ..."
 

Malika

Well-Known Member
The big communications company Orange in France supports a charity and advertises this in its brochures with the tactful slogan: "We are fighting against autism"... (my direct translation)
 
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