Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 It's related to the entire thread. Hello? Should we stick you in an HB chamber? :-) > > > > > > Col, why would you not want to educate the public at large? They > vote > > > and they spend. > > > > > > If they don't " get it, " they need education. We can do that. > > > > > > Autism's no fun when there is constipation and head-punching > > > involved. If someone can talk, drive, and hold a job w/out > > > assistance, more power to them. > > > > > > But, that is only one end of the spectrum, > > > Carolyn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Thanks Lenny. Compliment is appreciated. It is important to note: that services to hard to get no matter where you live. Every family TACA works with is fighting and settling for less in the amount of services. Kids on the low end of the spectrum and on the high end often get screwed regularly. There is no rhyme or reason regarding who receives services and who does not. Typically families who follow best practices obtain more than families who don’t. Best practices are: Independent assessments in all categories of need and a pitbull attorney to fight for it. I did not say that these are full proof nor fair. I wish I had some magic to offer here. We have enough on our plates. All my best, a Jeffs mom From: EOHarm [mailto:EOHarm ] On Behalf Of schaferatsprynet Sent: Tuesday, May 29, 2007 6:42 PM EOHarm Subject: Re: You Tube Video Blasts Autism Speaks Hi Kathleen, California has some of the strongest treatment, cure parent advocacy groups in the country (TACA and FEAT) and it shows. There are FEAT board members who have kids on both ends of the spectrum, btw, so you might imagine that the fight for services goes across the spectrum, as it should. Those who have kids on the low end of the spectrum who do not also advocate for those on the rest of the spectrum are working against their own interests. After going through treatment hell and highwater to get our kids higher functioning, we would then just give up half-way fighting for services? It just doesn't make sense and no one even suggests it. Lenny > > And where I used to live in Central California it is the HFA kids that get the better services. The coveted 40 hour a week in home programs designed for the children to recover. When I moved to the lost coast I had to threaten the school district with a lawsuit to replicate services. I won, but my son is still the only child here with an appropriate program. The lack of universal availability of serrvices for all of the children is maddening and unfair. > Kathleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 (snip) I am finding more and more > there are some very clear distinctions between autism and Asperger's > and there are even some clear subdivisions within Asperger's itself, > leaving more than just one " type " of Asperger's. (snip) All I know is that what we > incorporated to recover my son was light years from what I had to do > with my daughter and many other Aspie's we serve. > > Sorry to be getting back to this so late , but I was wondering if you had any thoughts on what you've seen (and alluded to above) in light of the Nataf paper that says porphyrins for Asperger's children were the same as controls. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2007 Report Share Posted June 3, 2007 Hi Anita! It's hard to say. We have seen similarities across the board in many areas between autism and Aspie, yet some have few, if any corresponding physiological characteristics. As you know, each of these individuals are as individual as their fingerprint, which makes categorization difficult sometimes. We have had a lower number of Aspies with definitive metal toxicity issues, but there have been enough! I would be quite hesitant to make the leap to Aspie's having a lower incidence of metal toxicity. Many of the genetic SNPS, immune system issues, gut issues, and metabolic issues are present in both autism and Aspie. Especially common between them are the MTHFR gene mutations and methylization issues. One theory is that Aspie is a milder form of ASD, and those with severe metal toxicity would likely fall into the more severe end of the spectrum, such as autism. No hard data to substanciate that, just an opinion from one who humbly knows I have MUCH more to learn! The more I learn, the more I realize I don't know jack! Obviously, much more research is needed in this area. > > (snip) I am finding more and more > > there are some very clear distinctions between autism and > Asperger's > > and there are even some clear subdivisions within Asperger's > itself, > > leaving more than just one " type " of Asperger's. > > (snip) > > All I know is that what we > > incorporated to recover my son was light years from what I had to > do > > with my daughter and many other Aspie's we serve. > > > > > Sorry to be getting back to this so late , but I was wondering > if you had any thoughts on what you've seen (and alluded to above) in > light of the Nataf paper that says porphyrins for Asperger's children > were the same as controls. > > Anita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Hi , If I may, I'd like to add something to this. In the case of my own son, I believe wholeheartedly that metals have influenced him and he is diagnosed with asperger's. However, the clinical picture to begin with was pure classic autism, but high functioning. I noticed something wrong immediately, the first month of life. Unlike many here, he did not regress from perfectly developing into autism...he simply regressed as it went along starting at the beginning, alternating with ups and downs like a true roller coaster ride. He was what is referred to as the " angel " autistic...the one who never complains, never cried, never fussed. He was our 'bump on a log'. He slept so much at first, I had to wake him to feed him because I thought he might starve. While he reached each milestone on time, he was clumsy. He spoke on time, but barely spoke. He had no curiousity, no imagination and did not know how to play. His baby elephant (a stuffed animal he adored) was named " baby elephant " because that was what it was. He never named it, never talked to it, never hugged it. But he could not sleep without it and carried around with him everywhere he went. He barely spoke and when I put him to bed, my heart broke every night as he shifted his blank stare to the wall and disconnected. He couldn't follow a pointed finger, ignored his name, reversed his pronouns and was limp when we picked him up. He spoke every morning like a robot. He actually sounded like a computer but would drop the sound when the rest of us began talking to him. He was always the first awake and always came to our room to tell us he was getting on the computer. He could not tell that we were asleep so he simply spoke to us and we woke to this sound every day. The only time I even questioned his vaccines was after the MMR when he walked like he was drunk 2 days later. He seemd lost. He was extremely hypoactive and now, looking that up, if I type " hypoactive children' into the search engine, everything that comes up is encephilitis. We could not always wake him when we tried. He would callapse in our arms and stay asleep. His soft spot, BTW, did not close until he was almost 2 years old. Some have suggested that may have helped him in the long run, allowing his brain room to swell. And yes, his head size increased around 6 months old, then returned to normal size later. At 3 years, he was evaluated as 15 months behind in language development and his speaking was complicated by constant use of echolalia. His bowel movements were loose, mossy and definately not normal. His regression came in potty training which he was for a year (age 3) and then he could no longer hold it at night (age 4 through 6). Although he began to speak more, it worsened as each year passed in that he was harder to understand at age 5 than at age 3. At age 6, he began to stutter and stammer and talked so fast that words blended. He also spoke almost entirely in vowels, using only the first consanant. He also suddenly turned hyperactive from hypoactive. He has changed so many times, I couldn't list it all here. Believe it or not, we were reassured every step of the way by speech therapists, his doctors and early intervention programs. He slowly got better over time and was finally diagnosed at age 8 with asperger's. Today, he is far better than he was before but he still cannot read faces. It was just a year ago that we had to sit him down and explain a sleeping face. He was still having full one way conversations with me whenever I took a nap. I believe he has some ability to rid himself of the metals, but it just wasn't enough to keep him from falling. To this day, if he drinks soda from a can, he becomes hyperactive, jittery and cannot be calmed by us. If that does not occur, a horrible mood swing develops and he is angry or upsetted. I, unfortunately, believe that most research concerning aspies is directed at high functioning aspies who may have an even higher ability to rid themselves of toxic metals. Keep up the good work. Col > > > > (snip) I am finding more and more > > > there are some very clear distinctions between autism and > > Asperger's > > > and there are even some clear subdivisions within Asperger's > > itself, > > > leaving more than just one " type " of Asperger's. > > > > (snip) > > > > All I know is that what we > > > incorporated to recover my son was light years from what I had to > > do > > > with my daughter and many other Aspie's we serve. > > > > > > > > Sorry to be getting back to this so late , but I was wondering > > if you had any thoughts on what you've seen (and alluded to above) > in > > light of the Nataf paper that says porphyrins for Asperger's > children > > were the same as controls. > > > > Anita > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 Hi Col. OK - here's my 2 cents and a bag of nuts! Keep in mind, this is just an opinion at this point, but it's beginning to develop into much more. I'm very interested in conducting some studies to confirm these thoughts, but you know how that goes with limited funding and all!! There are a few core concepts I believe, after dealing with thousands of kids with autism and Asperger's, and having one child with each myself. These are not proven at this point, but I really don't think that I'm wrong on this. Time will tell. First we know that the diagnostic codes from DSM-IV are rediculously outdated and flat out wrong for both autism and Asperger's, so I don't put too much stock in the current dignostic system. A HUGE portion of kid with autism and Asperger's are missed on a daily basis with accompanying stupid statements like " He can't be autistic, look he's affectionate! " OMG - and we wonder why we're in this current delimma! I also think that a HUGE portion of kids that are diagnosed as Asperger's are done so because by the time the Dx is made, they are much higher functioning and the developmental history is not given enough weight in the Dx. The more I work in this field, the more I see very definitive differences between HFA and Asperger's. Although most will say there is no difference between them, I strongly disagree. I work with both in large numbers and the ways we work with HFA vs. ASP is quite different. There are also many differences in the social aspects and emotional stability. There also seem to be 2 very clear cut (at least in my opinion) divisions within Asperger's that I have never heard defined elsewhere. I could go on for days regarding this, but I'll spare you my soap box for tonight! The lower functioning of the two groups is quite similar to the current ASP diagnostics, with a few updates of course! The higher functioning of the ASP's are often misdiagnosed with any combination of the following AD(H)D, Bi-Polar, various mood disorders, OCD, ODD, severe anxiety disorder, sensory integration dysfunction, and others. My daughter and I both fit this profile as well, both being misdiagnosed as AD(H)D, Bi-Polar, anxiety disorder, SID, and OCD. Needless to say, looking back we know that is not correct. In my case, after 20+ years of God knows how many psychotropic meds that made me worse, didn't work at all, or would help for a short time and then stop working, I found that Bi-Polar was not my main issue, ASP was! This would of course explain why none of the mood stabilizing drugs were working!! It wasn't until I had a severly non-verbal child with autism and began this research journey that I figured out we were barking up the wrong tree. Now, it's confirmed on a daily basis as I see patients mirroring our issues, misdiagnosed as described above, and so overmedicated they can't even function, yet still present as anything by typical and making very little, if any, progress other than being so doped up they are not quite as difficult to deal with. I also find it interesting that the treatments for ASP vary greatly from what is done with our autism patients. Many of the biomedical interventions seem to cross over, but from a behavior, mood modulation, emotional stability, socially appropriateness standpoint, they are quite different and usually require a distinctively different approach. Anyway, it sounds very much to me like your child had autism, not Asperger's, and should have likely been diagnosed in the HFA category later in life. But then again, where are my credentials?!!! LOL!! Unlike many others, I think autism progresses to HFA and Asperger's progresses to HF Asperger's. I have yet to find a case where I think a child with true Asperger's started out with true autism. I'm sure it's possible, as we all know there's always an exception to any rule. However, I have yet to see it and the more I talk to others who have been Dx that way, the more convinced I am. The truth is in the details, which unfortunately, seem to get overlooked a lot in these cases! Just my thoughts! > > > > > > (snip) I am finding more and more > > > > there are some very clear distinctions between autism and > > > Asperger's > > > > and there are even some clear subdivisions within Asperger's > > > itself, > > > > leaving more than just one " type " of Asperger's. > > > > > > (snip) > > > > > > All I know is that what we > > > > incorporated to recover my son was light years from what I had to > > > do > > > > with my daughter and many other Aspie's we serve. > > > > > > > > > > > Sorry to be getting back to this so late , but I was wondering > > > if you had any thoughts on what you've seen (and alluded to above) > > in > > > light of the Nataf paper that says porphyrins for Asperger's > > children > > > were the same as controls. > > > > > > Anita > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2007 Report Share Posted June 5, 2007 Hi , I think you make some interesting observations and good points. Yes, there are many many aspies misdiagnosed. My understanding is that ADD and ADHD is the most common misdiagnosis. In many ways, I believe this also has to do with ability and outright symptoms. My son has a friend, CLEARLY aspie and not diagnosed, and he is considered odd with major anxiety issues. Another in our kid's school was dx'd with ADHD. One of my son's teachers was the one who spotted the difference after knowing my son. I also agree that mood and emotional symptoms are quite different in Aspie's. However, I also contribute this LARGELY to their awareness and frustration of trying to live in a world that makes no sense to them, where high demands are placed upon them that they cannot meet, and because their expectations of themselves are so high that they are frustrated with their own failings. Show me a child with a disability, and I will show you a child with emotional meltdowns. ANY disability. True, the AS kids are going to be even more prone to that, but this is more because of the constant situations of not understanding. For instance, a child who has difficulty in reading will be frustrated and embarrassed and feel badly if they are put in a situation where they have to read in front of others. In most other situations, they will do better. A child on the spectrum, particularly aspies, will have trouble at every turn. Not to mention, aspie kids are often very smart. They are told they are smart and they believe this in their hearts. The intolerance of themselves not being able to understand material the other kids seem to pick up so easily is heartbreaking, embarrassing and downright tortorous to themselves. They cannot grasp why they are so smart yet cannot understand some of the simplest of things. Add to that the basic issue with all on the spectrum of never asking for help or telling anyone when something is wrong, and you have yourself one depressed, emotionally unstable kid. For ourselves, this is a very important issue that we work with our son on more than almost anything. We finally have him at the point where he does ask for help, is not embarrassed to admit he doesn't understand something and it has done wonders for the emotonal outbursts. However, in some areas it remains and I suppose it may always be there. Col > > > > > > > > (snip) I am finding more and more > > > > > there are some very clear distinctions between autism and > > > > Asperger's > > > > > and there are even some clear subdivisions within Asperger's > > > > itself, > > > > > leaving more than just one " type " of Asperger's. > > > > > > > > (snip) > > > > > > > > All I know is that what we > > > > > incorporated to recover my son was light years from what I > had to > > > > do > > > > > with my daughter and many other Aspie's we serve. > > > > > > > > > > > > > > Sorry to be getting back to this so late , but I was > wondering > > > > if you had any thoughts on what you've seen (and alluded to > above) > > > in > > > > light of the Nataf paper that says porphyrins for Asperger's > > > children > > > > were the same as controls. > > > > > > > > Anita > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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