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Loulamai
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22 Oct 2013, 8:33 am

What do I say to that? Our son was diagnosed Thursday and this is my husbands theory. He doesn't want him labeled and dosed up like he was (ADD). Do I just smile and nod until I can get us into a family counselling session or something? Apparently I'm making more if it than it is, I'm reading lots because that's what I do, so I'm trying to find ways to adjust my own reactions and understanding of how a my boy thinks



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22 Oct 2013, 9:42 am

I'm assuming you mean diagnosed ASD.

OK-- he will NOT grow out of it. Ever. No matter how long he lives, he's always going to be ASD. He will, assuming that he's reasonably bright and fairly mildly to moderately affected (which I'm assuming he is-- it's hard to deny an issue in a moderately to profoundly autistic kid), learn coping and concealing strategies as he goes through life. This is usually what people are talking about when they talk about "growing out of it."

It works, I guess. You avoid the label and some of the traumas that come with it. But it's harder, slower, and more painful than it has to be, and you do not get through it without suffering some serious frustration and damage to self-esteem. I was one of the kids who "grew out of it;" I had no other option as I was 16 years old when "Asperger syndrome" hit the DSM. In 1998, at 20, I was one of the first people in rural West Virginia to know about it...

...and I woudn't have known if the therapist I'd been seeing for depression hadn't 1) got her bachelor's from UCLA and 2) had an Aspie nephew. I avoided the label until 2010. I did not avoid learning that I was wierd, bad, generally f**ked-up, and broken. I'd already figured that out by the time I was, like, six.

OK-- you cannot therapy him out of it, either. No matter how many coping skills he learns, they will always be just that-- coping skills. Ways to deal with being ASD in a neurotypical world. You cannot medicate him out of it, either. You can use medication to control some symptoms-- like aggression, or perseveration, or anxiety-- if they are truly bothersome or disruptive or dangerous to your son or other children and/or family members. Unless those symptoms are pretty extreme, I would recommend against medication. They like to throw heavy atypical antipsychotics at ASD-- it's getting less fashionable, but it's still common. They are nonspecifically effective because they are nonspecifically sedating, and for that reason they are beloved by ignorant doctors looking for a quick fix and other lazy, uneducated people (like some in the public school system). I'm not saying they're never the right choice. Those medications have their place, but that place is limited and specific.

There's a decent book out there called "Straight Talk About Psychiatric Medications for Kids." It's not exhaustive, but it is a good jumping-off point. It will at least give you a vocabulary with which to talk to experts, and that's huge.

I'm guessing your husband had some bad experiences with being over-medicated, over-scrutinized, over-criticized, and over-pathologized. Probably suffered a lot of damage to self-image, and probably still struggles with seeing himself as "broken" from day to day. Just a guess-- I could be right, I could be wrong, but I know that's a problem a lot of ASD adults have. People who were not diagnosed as kids have it...

...and people who were diagnosed as kids have it. I can't say it seems to be worse in one group than in the other-- people who weren't diagnosed and/or taught coping skills as kids seem to have a worse case of it (personally, I'll be struggling with it for the rest of my life)-- but I can say that it's more prevalent (if sometimes milder) among spectrumites in their teens and twenties who were diagnosed as children.

Be on guard against this, and against your own natural impulse (I think most NT parents of ASD kids start out with it) to find something that will "fix" him. He's not fixable, because he's not broken. He's different-- maybe a little different, maybe a lot different. Difference causes problems-- maybe a little, maybe a lot, maybe small problems, maybe big problems. You have to deal with the problems, and you have to ultimately teach him to deal with the problems unless he's so profoundly afflicted that he's never going to be independent (and believe me, it's too soon to tell).

But trying to "fix" him is a waste of time and energy. Your goal is to help him grow, learn, and adapt to the fullest possible extent as an autistic person-- not to make him normal. As my stepmom liked to say, "You can't make a silk purse out of a sow's ear." It would be a waste of a perfectly good sow's ear to try.

YOUR HUSBAND HAS SOME VALID CONCERNS. Being "identified as a disease" is DEADLY. Listen to what he has to say, and take it on board. You don't have to go along with him-- in fact I'd recommend you don't, at least not entirely, as ignoring ASD will not make the condition, or the struggles inherent in even the mildest cases, go away.

Take your time and move carefully.


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22 Oct 2013, 9:51 am

Quickly reading back over your other posts-- gotta go jump in the shower, load up my two littlest kids, and dash off to the therapist I'm STILL seeing for "broken neurotypical syndrome"-- it crosses my mind to suggest that your husband is probably ASD as well.

That probably explains why he hates seeing you cry, you don't feel real connected, and being treated for ADHD as a kid didn't go too well for him. Telling ASD and ADHD apart is like splitting hairs.

Does your husband connect better with DS8 than you do?? It happens sometimes-- when I was an adolescent, Saint Alan of Aspergia (my dad) was the only person on the planet who could get through to me sometimes. We thought the same.

If that's the case, it's time to get Daddy reading. Appeal to his sense of logic and problem-solving. He might have fun with it-- as long as I don't take it too seriously, God knows I do.

These are quick thoughts. Take with a liberal amount of salt. I really have to go shower now, or I'm going to be late and smelly with sloppy children. I hate to go out looking like I'm autistic. :lol:


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22 Oct 2013, 12:10 pm

Loulamai wrote:
What do I say to that? Our son was diagnosed Thursday and this is my husbands theory. He doesn't want him labeled and dosed up like he was (ADD).


Nobody "grows out" of Autism, it's a permanent configuration of the brain, resulting in a neurological dysfunction. That does not heal itself, not ever. There are plenty of members here on WP who have struggled with High Functioning Autism for more than half a century, many of us weren't even diagnosed until our 30s or 40s, but believe me, my autism didn't just appear out of nowhere, nor has it abated in the least as I aged. I have simply learned to function within it, because I had no other choice.

As BuyerBeware noted, one does develop Coping Mechanisms as the years pass, so many of the more obvious external signs of autism get smoothed over and covered up, but the internal stresses never go away. The autistic brain remains forever impaired when it comes to processing incoming sensory experience and evaluating and prioritizing the data in-the-moment. When you don't experience it every day of your life, it may be hard to comprehend, but it's quite real. Because we live with it 24/7, it colors every experience we have and in no small way influences the very person we become.

OTOH, I will agree that being 'dosed up' is a bad idea. As difficult as the handicaps of autism are, there is no medication effective for the treatment or cure of autism and in my opinion, medicating the brain to compensate for individual symptoms, like ADHD or even anxiety should be resorted to only in the most extreme situations. Doping the brain does nothing to help a person learn to cope with their handicaps and modern SSRI meds have so many potential side effects (especially in young people) that they simply aren't worth the risks.

"Labeling" OTOH, is a completely different matter. Within the public school system, there is much more awareness of Autism as a handicap than in the days when I was in school, so having that label can give a student access to assistance that they would otherwise never receive. I've seen the difference through the experiences of a family member diagnosed PDD-NOS and I think it's made huge differences in their life, both academically and personally, to have that awareness and support.

And support is the key word and the crucial thing Dad needs to understand. It is ignorant and cruel to treat a handicapped individual as though their disability doesn't exist, just because it's invisible. My parents bent over backwards to try to turn me into a "normal" kid and it did not work - not in the slightest - however, it did leave me feeling as though everything about me was unacceptable and somehow 'wrong' and lead to a lifelong battle with chronic depression. Only the diagnosis of AS at 49 finally vindicated my own convictions that being different had never made me inferior. In my day, it was a forgivable mistake, autism was virtually unheard of - today it's a different world. Any parent who loves their kid should make an effort to understand and be supportive of their child's internal challenges.



Loulamai
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22 Oct 2013, 5:01 pm

Thanks for your responses. I think he's willing to listen to changes I want to make, (eg DS is very affectionate and I don't like to be touched much so I'm finding ways to accommodate us both rather that tell him not now like we used to, DH isn't but will if I'm there to prompt) but whether he follows through... I'm just trying DS on a 5-HTP for 2 weeks to see if it helps with his anxiety, I was prescribed antianxiety meds but don't really want to go there yet. The school were the ones that picked it up and having that label he now gets assess to more support, speech therapy and an OT. There are so many kids at the school with varying degrees of ASD so they know what's what.