MIT Autism research - Reversal of symptoms?

[witzend]

MIT Autism Research

I heard this on the news today - a whole two sentences that didn't make any sense. This report is being released today. Of course it's just in the developmental stages, but it certainly seems to be promising. I don't know of any parent or caregiver who wouldn't want something that could reverse the symptoms of autism no matter how long it took or how old their child was.

Thought you would all like to see this one.

 

[Liahona]

Thanks that was interesting.

 

[SRL]

I heard this on the news today - a whole two sentences that didn't make any sense. This report is being released today. Of course it's just in the developmental stages, but it certainly seems to be promising. I don't know of any parent or caregiver who wouldn't want something that could reverse the symptoms of autism no matter how long it took or how old their child was

Thanks for the article. Interestingly enough, curing Autism is a *highly* controversial topic. Part of the reason is that not everything about Autism is negative and in fact some of it is very positive: many brilliant minds come wired up with Autism Spectrum Disorders (ASD) or ASDlike traits and have made significant contributions to the world in many fields.

And as for parents wanting something to reverse symptoms, if you hang out on any forum with adults with Asperger's, many are actually relieved if their children wind up having AS as well because they at least feel they stand a chance at understanding them better.

This will be interesting to watch--thanks.

 

[Hound dog]

Interesting article.

I dunno about anyone else, but I think of autism as more of a neurological condition than it being mental illness.

It would be nice to be able to have a reversal of symptoms. But Travis had a lifetime of consistant parenting that also worked alot on his symptoms and if I'm honest with myself..... I've seen no real change in his symptoms over the years. Just an autistic child who has aged and matured. He is still far behind his peers, and at this point I doubt he will ever catch up.

SRL

I also get tired of hearing mostly negatives when it comes to autism. One reason I liked Travis' neuro so much is because the first thing he did after giving us the diagnosis was to tell us all of the positvie things he'd experienced with patients with the disorder.

Travis can make a computer sit up and beg. He is currently running 2 web servers off his computer here and hosts tons of sites. (and that's not all) He can pick up any wind instrument and play it beautifully. There is no one more giving, loving, and loyal than Travis. He can't do simple math, but throw him the really complicated stuff and he's in heaven.

Even though Travis has Pervasive Developmental Disorder (PDD), the positives seem to outweigh the negatives.

 

[SRL]

Whenever the topic comes up on autism forums along the lines of "should we have more kids given the genetic tendencies" or "would you change it if you could", the tide seems to have shifted fairly far in the direction that many wouldn't feel comfortable admitting it. But I always wonder if offered a magic pill, how many of those same parents would go for it to relieve their children some of the negatives. I have no idea, but I do know it's become very unpopular in some circles to admit it!

I'm a respector of difficult child for the unique person that he is and that is in part due to his ASDlike neurology, but once when I was in the absolute worst of difficult child's issues (debilitating anxiety and every other symptom at record high levels and severely impacting our family's ability to function) I read a bit written by a mom going on and on about how she wouldn't change a thing about her child because Autism was part of who he was. I remember thinking then that 1) she had a mild mannered version and 2) she must be crazy because no one in their right mind would wish what difficult child was going through on their child. If offered a magic pill right then I would have given it to difficult child in a heartbeat--he was suffering dreadfully and no amount of intellectual abilities or uniqueness seeemed worth the tradeoff.

If/when a significant preventative or reversal treatment is found it will be interesting to see what parents will do. There are certainly two strong camps with a lot of parents in between. Our parents and grandparents saw a lot of medical breakthroughs that widely impacted the population (polio, antibiotics, cardiology, etc) but we haven't seen anything to this degree in our lifetimes.

 

[BusynMember]

Autism is pretty much a gentic neurological difference from everything I've been told by the experts who have treated my son. He's a pretty neat kid, albeit quirky. I think I'd leave it up to him if there was ever the chance of a cure--he seems happy the way he is, but, being Autism Spectrum Disorders (ASD), he's not able to express himself well. Maybe he really does want to be "like everyone else." I think parents of low functioning Autism Spectrum Disorders (ASD) kids would probably jump to reverse the autism. It gets murky when your kid is high functioning because the kids are really neat and many are brilliant minds (see Bill Gates/Aspergers). There are all sorts of interesting theories on autism, and I think I've read them all...lol. Interesting article. Thanks.

 

[Fran]

<span style='font-size: 11pt'>Thanks Barb, I read it and forwarded it to difficult child's Dr. It helps me to have another set of eyes look at the study.
I don't want to obliterate who difficult child is. I love his quirkiness. I want him to function and have a full life. If this works to help him with his learning disabilities I would camp out on their steps for an opportunity to have difficult child participate in the study. Of course, if difficult child becomes oppositional and it's not agreed upon by him there is nothing they can fix.

Of course, all I can think of is "Flowers For Algernon". :crying: </span>

 

[SRL]

Tee hee, Fran. I can just see the line of tents in front of the research lab now. Just like camping outside of Best Buy before a video game release.

 

[LittleDudesMom]

This is really interesting. Not having an aspie kid, I can only relate through the stories you all have shared over the years. I kinda have mixed feelings about this.

One side of me thinks about the whole "genetic cleansing" aspect, while the other part of me says "if you can take the struggle away from your child...."

Would those of you with aspie kids think any differently if they could tell, right at birth, and "make the correction" before you even brought your child home vs doing the reversing once your child has already developed and has a personality?

What if they were able to just pinpoint some of the negative behaviors, how would you feel about that?

I'm just thinking outloud here. I think this brings up issues that are tough to think about. Some things you would want to change and others you wouldn't. Doesn't sound like that is possible since they are talking reversal of both cognative and behavioral traits.

This is definately something to watch.

Sharon

 

[SRL]

Sharon, I think it would be a scary prospect to hold this choice in one's hand. If we're talking physical disability or severe mental handicap it's one thing, but when we're talking a higher functioning Autism such as Asperger's, it becomes a lot harder to evaluate.

I have heard parents describe their desire for treatment/cure as clearing up the "mental cloudiness" of the various issues that seperates their child from the world but to retain all the unique gifts, etc that are part of the child. Having seen my difficult child go from midway between neurotypical and Asperger's to nearly NT today, I sincerely doubt that it's possible. I think whatever neurological rewiring gives them the unique mental capabilities also short circuits the social, etc. At age 5, I literally watched difficult child over a period of a few months take his head out of the books and become socially aware and interested. In the months that followed he started losing the ability to spell words that he had been able to spell since he was 2 and his interests shifted suddenly from geeky stuff to regular kid toys and topics. He's never looked back, but has made an almost steady progression in favor of conectedness in the social world while having very little interest in the geeky kind of topics that were the center of his world for all of his early childhood. I just don't think there's room in that brain of his to live in both worlds!

 

[Fran]

<span style='font-size: 11pt'>I agree with SRL. Parts that make him geek like also keep him out of the social world. difficult child wants desparately to connect. He had that when he was away at school and became a real friend and leader. Unfortunately, he didn't have all the skills or frame of reference to handle all those responsibilities or efforts. He couldn't balance being a friend with being a student. Being a friend took priority although his friends went to class. He misses his friends desparately because it was the one time in his life that he had a "gang" to hang out with. I can't fix it. He is an adult and he will have to make new friends but he can't seem to connect to anyone he has met.
If his dendrites were fixed and he could function enough to make change comfortably and maintain independence, I would go to my grave at peace that he would not be under a bridge or lost in the world.He wouldn't be part of the invisible population.
The fear of abuse of this discovery isn't going to be with the autistic population. It will be with those who want super children. Better SAT's, better colleges etc. It has to be controlled or genetic engineering will be around the corner. My kid shouldn't have to suffer because of abuse by the unaffected so I don't think it should be stopped, just regulated. </span>

 

[Alisonlg]

One thing I've always wondered since coming to this site is everyone here's position on Mercury poisoning. I hear lots of you saying you accept autism/Pervasive Developmental Disorder (PDD)/aspergers as part of who your child is, but I know many moms who believe that it is NOT part of who their child is...that it was given to their child. I think the moms that I know who believe their children were poisoned would take advantage of any reversal of symptoms that was offered to them.

 

[--Eleanor--]

The MIT study concerned only Fragile X syndrome, which is actually a very tiny subset of autism spectrum disorders, and one of the few subsets for which the "cause" actually is known. Fragile X generally affects boys, whose X chromosome (comes from the mother) has a specific abnormality. Since girls have two Xs, they generally are okay because one of them is "normal," but they can pass on the abnormal one to a son. Fragile X generally has both mental retardation and autistic traits. Since Fragile X can be very easily detected (and ruled out as a cause for most kids' autism spectrum disorders) this breakthrough isn't really making a lot of waves in the autism community, as far as I can tell.

As to the "cure" versus "don't cure" debate that rages on the internet, with the "neurodiversity" crowd jeering at the "curebie" crowd and vice versa, I generally stay out of it because it is premature. Nobody has come even close to actually finding a cure for autism (which, as noted above is a neurological disorder and not a disease). I think that what a lot of the anti-cure folks are concerned about is not that there will ultimately be a magic pill to cure autism, but that specific genetic markers will be identified so that autistics (or potential autistics) will be aborted--that is, autism will no longer exist as a natural part of neurodiversity. (Similar to what is happening with Down Syndrome.)

 

[witzend]

I don't know anything about what causes it, and I don't pretend to. Having a genetic neurological deficit myself, I feel like I have a little more insight than many as to the reality (for me) that what causes it not mattering. If someone could give me an injection that would reverse the muscle wasting, I would take it in a heartbeat and be confident that it wouldn't change "me" at all.

I'm reading the article as the reversal of symptoms being lessening the need for repetitive movements, short term concentration, etc. withdrawing, type of symptoms, not changing personalities. I do not believe that Aspies or Autism is a mental illness. I'm sure that it makes life harder for people who have it. I'm sure that parents with children who are more severely affected worry how their children will care for themselves when the parents are gone.

Our street has 22 houses on it. There are six children in five families with varying degrees on the syndrome of Autism. Some are shy and withdrawn and have difficulty communicating. One eats grass and dirt at age 15. Another family friend has a boy who is now 17 and we saw him last Christmas. He stood in the corner watching the crowd playing with himself. As an adult who has seen many people with difficulties, I'm fine with that and don't judge in any way shape or form. But, there for the grace of god go I. My friends are wonderful loving parents. I have never once heard them complain. I know myself well enough to know that would not be my reaction if it were my child. Their son was not born until they were near thirty. What will become of him when they are or not well enough to care for him? If a treatment could break that spell that keeps him so locked inside of himself, I know that they would jump at it.

 

[SRL]

One thing I've always wondered since coming to this site is everyone here's position on Mercury poisoning. I hear lots of you saying you accept autism/Pervasive Developmental Disorder (PDD)/aspergers as part of who your child is, but I know many moms who believe that it is NOT part of who their child is...that it was given to their child. I think the moms that I know who believe their children were poisoned would take advantage of any reversal of symptoms that was offered to them.

Many, many of the families on the Autism forums I visit report genetic tendencies: undiagnosed AS, shadow Autism Spectrum Disorders (ASD) traits, Obsessive Compulsive Disorder (OCD), and anxiety. The genetic tendency is strong enough in one side that genetics alone was enough to explain it as far as I'm concerned. For me, the jury is still out on vaccines or any other environmental causes. In the end what I suspect is that researchers will find both a genetic cause as well as a genetic predisposition which makes individuals more susceptible to an environmental trigger (or triggers)...but I'm just guessing on that.

I don't have any reason to suspect them in my difficult child's situation but now that he is very close to "normal" I have opted to be cautious. I avoid the flu vaccines which do still contain thimerosal and my pediatrician prioritizes the other vaccines so that he's not getting injected with 8 different things at one time.

 

[Fran]

I'm not really involved with the debate since it doesn't seem to apply to my son. He inherited characteristics from both sides of the family. Whether the trigger was vaccinations or febrile convulsions or who knows is always a question. I don't think he would have been unscathed regardless.
I seriously doubt that all those parents are wrong I just don't really see it apply to my son.

 

[SRL]

I'm along those lines with that same thinking Fran. Because there is so much that points to genetics I haven't dove deeply into vaccines, etc. I always have said that if my kiddo had stopped talking and started regressing the day after his MMR vaccine as some parents describe I would have probably been leading the fight.

 

[--Eleanor--]

I'll weigh in on the genetics side here, too. Although my son is the first in our family to actually have enough symptoms to be diagnosed with an autism spectrum disorder, we have several generations of hyperlexics before him (including me), and a number of us have other Autism Spectrum Disorders (ASD) "shadow" traits as well. But I'm not ruling out the possibility that environmental factors may have caused him to have more severe manifestations of Autism Spectrum Disorders (ASD) traits than previous generations. (He, by the way, had his vaccinations after they took out the thimerisol...)

 

[Fran]

Eleanor, our families have the same pattern. We have a lot of characteristics in mild forms but no one was ever diagnosed as anything. No one didn't work.

SRL, I am with you. I'd be right there if difficult child regressed after his vaccinations.

 

[Hound dog]

I don't debate the mercury theory either. I know I'd be concerned if my child's behavior suddenly changed profoundly after an immunization, though. I'd definately want to know why.

It's hard NOT to see the genetic trait in husband's family. husband has AS, he has a cousin with AS, his brother has strong traits, from what I've learned with other male family members most of them also had traits, some pretty darn strong.

Travis' neuro said that he would've probably had AS except the brain damage also affected the parts of the brain dealing with those issues making his more severe which gave him the Pervasive Developmental Disorder (PDD) diagnosis.

As far as would I go back and change Travis if I could..... Nope. I've always loved Travis' uniqueness. I've always admired his keeping to the beat of his own drummer. And he's always been a happy kid overall. Still is pretty happy just the way he is.

Now I have to say when he was down in the trenches having real problems with all of his dxes back in jr high he might have been able to use more effective interventions as far as the brain damage issues. We had more trouble with the seizure issues and such than the Pervasive Developmental Disorder (PDD).