Autism, Aspergers, PDD/NOS, ADD/ADHD

[chickiebaby]

angiechick and katylester, thank you for adding your voices. Of course we all need to find what works for our families, but its really worth people understanding that we are talking about major differences in the ways brain work, differences that may not change despite our best attempts - or that some of us would not want to entirely change.

My Aspie son is the best and loveliest guy in the world, and leaving for college this summer. We have tried to teach him a combination of changing himself to fit the world enough to get what he wants and needs from it AND changing his world, his immediate surroundings, to suit WHO HE ALREADY IS.

He knows how to look people in the eye for a minute if he needs to, like during a job interview, but he also knows how to disclose to friends that he is who he is.

It's notable that most of us into the whole "accept em how they are" stuff have pretty high-functioning kids. I imagine I'd be singing a different tune if I had a totally non-verbal, tantrumming, stimming kid who couldnt walk down the street. I might well feel like it was worth throwing the whole alternative meds aisle at the little guy, if that's what it took. We can all get so "momma-bear" about our kids . . .

My personal favorite "everyone ought to do what we do" is Omega-3s. They have made a big diff around here. btw, another aspie who loves his standard poodle. Interesting, eh?

Also, has everyone here had a chance to enjoy Wrong Planet on line? I think I saw one mention earlier. It is a great place to enjoy the ridiculousness and fabulousness of the untrammelled autistic brain.

And, speaking of autism AND of poodles, has everyone read The Curious Incident of the Dog in the Night Time?

love, and thanks to every one of you for loving your kids so well.

 

[Wifezilla]

Postal, I guess the label only matters if services would be available based on having it. If not, then places like Wrong Planet are going to be more help than anything.

t's notable that most of us into the whole "accept em how they are" stuff have pretty high-functioning kids. I imagine I'd be singing a different tune if I had a totally non-verbal, tantrumming, stimming kid who couldnt walk dwn the street.

As the mom of a stimming non-verbal 6'3" 250lb 19 year old who acts more like a 3 year old...I would say you are correct. If he was HFA, I would say the rest of the world can suck it, he is just different and go screw yourself if you can't handle that. At my son's level though, he is unable to be alone, unable to take care of himself, unable to handle money.... he is VULNERABLE. I have tried some wacky things to get him to the point where he couldn't be taken advantage of, but it looks like he wont ever get to that point.

And yeah, I have been the target of some vicious attacks by autistic adults who called me a curebee and other hateful names. They have the "let him be" attitude, which is fine for someone on the OTHER END of the spectrum from my son. It doesn't cut for a kid who thought dumping a bucket of water in to a plugged in computer was a good idea because it needed to be cleaned (he did mean well though

).

Fortunately, my buddy with HFA gets what I am dealing with and understands me and my son. When my ADD and my son's autism clash, she is great at getting me to look at things from a different perspective. We call her Max's "Fairy God Mother "

(she does look totally hot in pair of goth wings btw)​

 

[BeardedChick]

I wonder if a diagnosis would help him, so he could understand and accept it. Or, if we should let it go and just try to help him learn ways to cope (I work with him all the time to learn coping skills, I want things to go well for him).

While the question was not directed to me, I will tell you how it has been for DH. When I met him, he had underlying issues of low self esteem and depression. He was *severely depressed* during his teenage years, and his parents were oblivious because he was functional (played sports, etc.). He tried to kill himself when he was 12, and dammit no one in his family even noticed. His dad was too busy, mom is completely self absorbed.

Anyway, we met when he was in his early 20's and he is a super-nice person. We talked through the depression issues when they came up, worked on building up his self esteem, and tried to deal with it positively. It seems like we were together for 5 or 6 years before we realized he had aspergers. Anyway, I was looking for information about his tactile sensitivity and up came all the info about aspergers. DH is not professionally diagnosed, but has all the traits and now two of his first cousins have been diagnosed (his mother and grandfather have strong traits for it as well).

When he finally learned about aspergers it was a huge relief to him. He had always thought there was something wrong with him, it meant a lot for him to know there are other people like him. He finally internally felt normal in the aspergers realm.

I think for your kid, on some level it doesn't matter if there is an exact and definative diagnosis. Get him into professional councilling. He may be on the cusp and avoid diagnosis, but he may find as he grows up that the AS commmunity is where he fits in. If your son has AS, highschool will likely be an extremely difficult time for him and I would look for a good long term councillor now to help him get through. There may be things he needs to talk about that he can't tell you, ya know?

ETA: When I re-read it, I thought I should clarify that I am not in *any* way comparing you to DH's parents, Postal Chick.​

 

[BeardedChick]

And, speaking of autism AND of poodles, has everyone read The Curious Incident of the Dog in the Night Time?

Great book. We have a poodle cross, but DH love his Ridgeback most.

I will say avoid FASS at all costs. I ended up on that forum for a short while when I was searching for some support (AS/NT marriage is not easy at times).

FASS is supposed to be a family support group for AS, but it's a *horrible* place. I was appalled at the hateful attitudes toward AS.

It was

horrible.​

 

[chickiebaby]

Wifezilla, you are amazingly funny. Your kid sounds like a lot of work, and like a delight as well.

The way all these people with such different issues are lumped together with one word or one-line diagnoses- that's got to change.

Has anyone here read much Temple Grandin? She's the other person I really love.

 

[Wifezilla]

Temple Granden's writings helped us understand how deep pressure can be really helpful and soothing for some spectrum people. My son LOVES having his hands squeezed.

 

[crazy hen quartet]

A lot of great perspectives are showing up here, I am enjoying reading them.

First, I want to respond to ursusarctosana who shared the thought that our son was misdiagnosed. If you want to categorize autism as a strictly genetic illness, then I agree. He was diagnosed with autism by three different professionals when what he actually had was Lead and mercury toxicity coupled with rampant viral and yeast infections in his body. We treated those and lost his autism label. I feel the explosive rise in Autism diagnosis over the last couple of decades can probably be explained by what our son suffered from. While I do not doubt there are many autists who's diagnosis are genuinely genetic and for whom environmental factors play no role whatsoever; I feel the majority today are more like our son, hence the rapidly rising rates AND the growing number who are recovering by using biomedical treatments like we did.

I also want to say that I believe Autism actually is a genetic illness, but often triggered by environmental issues. Just as with cancer, you can have the genetic predisposition but whether it gets switched on or not is left to be seen by what you are exposed to in your life. My husband and my son have the same genetic mutation. My son was severely autistic. My husband... more of a possible aspie but never diagnosed. what is the difference? I feel it is environmental issues during the early years of life.

A quote I like to use from an MD regarding Autism: "Genetics load the gun, the environment loads the trigger"

While my son is considered "recovered" from Autism, he is still genetically the same person and still on the mild end of the spectrum. I used to worry, at the beginning of this pursuit, if by trying to get rid of what we considered the "negative" aspects of his autism we would also risk losing what we feel makes him an amazing and unique individual. The intense drive to gather information, the areas of intense interest and focus.. I was worried we would lose that too in our endeavor to get him to a point where we felt he had a chance at a "normal" life in this world.

Now, he speaks normally, carries on social conversation, shows interest in others, makes eye contact all the time and with a huge smile on his face, has friends, is potty trained, goes to school, sleeps through the night, doesn't physically stimm, no more meltdowns... the list goes on and on.

Here is what I feel is a critical difference. All of his areas of intense focus are still intact, but now he can communicate with us about them. He can share them with people, ask clear questions and get the answers he is looking for. I often take him to the East Valley Institute of Technology and he spends time with the professors there in their lab talking about cathode ray tubes and solar cells and electrical transformers and all manners of things I have no clue about. He never could have done that before, all he could do was sit and stare at things and stimm and try to manage verbal communication we didn't understand and when we couldn't' answer, he would melt down. Now he is moving forward rapidly in his persuits.

Could he slip back into Autism? Yes, if he was exposed to all the wrong things, I know we would see a regression. We did last summer when we let him spend all of his time taking apart old electronics.. and he began having major problems with many old symptoms returning. We struggled to figure out why, then his doctor ordered some labs and we found him so heavily toxic with lead (from the solder on the circuit boards) that he was almost hospitalized. We removed the metals from his body, and back to "normal".

I know that autism is a very rapidly growing and confusing diagnosis with new opinions and facts popping up every day. Just last month, UC Davis released a study showing that the rising rates of Autism are not linked to a shift in diagnosis but rather likely to be linked to environmental exposures. I just ask people out there to explore all the options. I know there isn't anything I wouldn't do for my son, and so I did what I felt I needed to. He was normal and healthy, and then he was not. so to me, it made sense that there was something far more compicated affecting him than a genetic neurological disorder. I knew there had to be an underlying cause if he regressed, there had to be a trigger. And we found it. Heal the body, heal the mind. It worked for us, and for many many people I know.

Here is that study from UC Davis, if anyone is interested:
http://www.environmentalhealthnews.org/ehs/news/autism-and-environment

respectfully-
Lisa

 

[crazy hen quartet]

Oh, and wifezilla... my son LOVES a good "press".

When he gets upset, he will lay down and ask me for one and it calms him right down.

 

[Wifezilla]

I have been thinking about making him a weighted pressure blanket. The price to buy one is insane, but I imagine that is due to shipping charges.

 

[crazy hen quartet]

We investigated weighted blankets too, and the cost seemed crazy. Finally I just covered him in a nice thick blanket and sat and pressed him starting from the shoulders down the back and legs, then back up to the shoulders and down the arms. I can't imagine the task on someone as large as your son.

My NT daughter saw all the pressing going on and one day asked for one too... she loved it. I know I like the feeling of a slight weight to my blanket, it just feels very secure and calming. I would buy them just to have them if they weren't so expensive.