About using reproductive technology to eliminate autism

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Well, just this morning there was an article in my local paper (London Metro) about a young boy whose behaviour was so bad he was given an ASBO (antisocial behaviour order) at the age of 10. He was then DX'ed with AS, prescribed an antipsychotic and now is no worse behaved than any other kid. There are two kids in my family, one with ADD and one with AS who have benefitted from medical intervention. My cousin with ADD was DXed when he was 4, has had some therapy and his diet has been supplemented with fish oils, which has also helped. He's now a popular kid no different from his friends. My cousin with AS wasn't so lucky- she wasn't DX'ed till the age of 13. Still, she's being taught strategies to cope with people and with life, and her parents are trying to get her into a special needs school where she can get more intensive treatment. She and her parents are sure she would have been far worse off without any help. Also, given the improvements happening in our understanding of genetics, neuroscience and behavioural development, it would be stupid to suggest that there will be no advances in treating autism, especially autism in children, in the next 10-20 years. I'm pretty sure that if my problems are autism related I'm unlikely to become normal in the short to medium term (say 25-30 years), but one day there may be a cure for adults and I hope I'll be there to take it.



If a treatment were avaliable to allow the messages that make the legs move to make them move, then the paraplegic would regain the use of their legs. There's no reason to believe that it's impossible to develop a drug or treatment that could do this, or one that could "reroute" your "messaging system". Treatments aimed at very young children, however, are far more likely to be effective as the developing brain has a greater capacity to adapt and form new neural pathways. Treatments that aim to train children with appropriate skills, behaviours and coping mechanisms are already widely used, and there are a few studies showing they work (can post at least one ref if you want it).



You're lucky to be around understanding people. I think your right that the younger generation has it a lot worse. It's no longer ok to just be "eccentric" or "odd", and whilst it's great that treatments are becoming avaliable, and that scientific research may one day yield some form of cure, the downside of AS becoming a widely recognised condition is that its sufferers are now further stigmatised and more easily recognised. I think my generation (20-somethings) are caught with the worst of both worlds. Too old for any sort of useful developmental intervention, too young to be well established in a real life (not online) community willing to accept our differences (if such a community exists/ever existed).



Yes, we need more research, and the sooner the better. Doesn't mean we shouldn't at least try to help autistic kids, though.



20+ genes and an unknown number of environmental risk factors that trigger the abberant development leading to autism in its myriad forms. Hence prenatal testing isn't likely to be widely avaliable in the very near future. I'm sure there are people who think sterilising people carrying genes thar cause a predisposition to autism or other genetic disorders would be a great idea, but if this was done there would be precious few "breeders" left. We don't have to wait for the world to change, the world is changing all the time. Many people who a generation ago would have spent their lives mute can now "speak" using facilitated communication. Children who would have been like me, who would have developed distructive and unplesant behaviours that would have isolated them from their peers, burdened their families and lead them to have isolated, unhappy childhoods are now being taught better ways to cope with and interact with the world and understand people. Some day a complete cure may even be possible. For me, that's something worth hoping for.

What behavior did he display? And here's the thing about that. When my uncle was 10, he had a speech impediment that was actually physically based (my cousins with it got rid of it with speech therapy). Kids teased him and he beat them up. My grandfather found it embarassing. This was in the 1930's so he couldn't just drug him (which is what they just did to this kid), so they sent him off to the county mental hospital where he lived for the next 29 years. All over a physical problem. My point being that they have no idea why low -functioning autistics act as they do. Their cures are to created to turn those kids into non-problems. Sometimes that may work and sometimes it just drugs them. Maybe that kid was just sensory overloaded and them trying to grab him made him worse. I can't tell from the ref you had. But, I'm sure you know as well as I do that those NT misinterpretations go on all the time because they don't know what is really happening to the child or adult. They can't honestly get inside the head yet. Maybe something to treat sensory overload or ear plugs would have worked just as well.

There's the other side to your family members being treated. To their NT parents and the NTs around they seem better off for it. This is my deal - I want to hear from those kids in ten years. That's when we will fully know the effects of all the interventions. That isn't just true of Autism, that is true of all research. If it works, that's great. I just want to see the long term results of it. Do you see what I mean? That doesn't mean I'm completely against them trying anything, but I think they need to tell them they don't know the long term results and effects and I hope that they are.

They've known about there were neurology issues with Schizophrenia for a lot longer than Autism, but they still are no where close to a cure. They've studied Migraines for almost 100 years and they still aren't even sure what causes them. Every time they think they know, they do more research and find out it's just the tip of the iceberg. In 10-20 years they will be much further, but only time is going to prove that they will find effective therapies or a cure. That said, I certainly don't want to imply they should stop, just that we can't expect fast results. Very little is actually known about the brain for any disorder. Neurologists would be the first to admit that.






If and when they have that. Right now they don't. I'm not fully convinced they have rerouted them (although I do believe that it's possible for some brain activity, I'm just not certain of this) and the reason I say that is because I see so many posts about the exhaustion and how they are not the same anyway. That tells me the brain isn't rerouted, but what is really going on is that they are fooled into thinking they are the same. Again, time will provide the data on how effective those treatments are. I don't believe at all that it's impossible, but it needs time to prove out those treatments and interventions. Right now, what I'm seeing Autistics say isn't convincing me. I also recognize that's not a true scientific study so I want more proof before I buy into it.







I don't think it's been luck given how many places I've worked and the thousands of people I've worked with over time. What I do think is that we have a tendacy to get overloaded by the situation and react in harsh verbal or non-verbal ways out of frustration. NTs do not know how to respond to that. They can't actually see into our brains to understand what's happening and chances are that they haven't worked with a person like this before. So, if you or I react that way, it makes them defensive and frustrated themselves. That situation is set up for failure. Just owning up to it with no defensiveness and anger has worked for me. I don't get impatient with them even when I think they should have understood. It's easy for them to think I should've understood people's unspoken intent. I think sometimes both NTs and Aspies get caught up in that game without realizing it and it gets neither side anywhere. That's when I just let them know, Hey, my brain exhausts me, frustrates me and confuses me all the time as well. So, if it's doing that to you, I understand. That is what NTs want and like, understanding. I don't have to really feel like they do about it, but it gives us enough common ground to acknowledge my brain's bad wiring and move on. Let's face it, they get exhausted by having to be literal with me all the time. I get exhausted trying to read their faces. We're both in the same boat at that point. I don't want to be totally cured, but if I could plug in some wiring to reroute that while their in my office, we'd all have much more energy and time. Just knowing I feel that way helps most NTs deal with it. They didn't ask to work with the woman from Pluto and I didn't ask to be dropped off here on earth, but since no one cares about our opinions and we have to get our work done, we deal with that fact as best we can.


I do think you are completely right about this feeling that we must all be homogenized drones stamped out the same way. What drivel. That was made up when they decided to have fewer teachers in classrooms to hold down expenses. That was the start of we will drug you into clones to save teachers time. It's still going full throttle. It won't stop until there is a business reason to change it. I've said before that social skills are not desirable in the Technology workplace. They want you working 9-10 hours a day in your veal cube and they want you silent. We never have a face to face meeting even if all the participants are in the same building. Everything is teleconference calls so you can keep working and talk for the five minutes you need to talk. That's the expectation. Social people do not do well in that. Some NTs can handle it and some can't. Once they figure out on a grand scale that Aspies are made for that, they will start encouraging people to breed them. That's good business. Talking during work hours is unproductive and wasteful. To be perfectly blunt, here it will get (and has gotten) people fired.






We just need to make sure we let parents know it is not proven out yet. I don't have any problems with them trying. I do have problems with most of the research dollars coming from people and companies with agendas, but that's true of any disease or disorder. Also, helping the kids means looking at adults with it and seeing how they learned to cope. It's finding how the skills that worked and how they developed those. That is invaluable especially with behavior therapies to reroute the brain. It could cut years off their research time and I want to see them look at that more.







As I said, those parents who don't want a child with Autism now and who have the traits in their families have the option to use birth control and sterilization. They are not helpless now. Frankly, some breeders need to stay out of the mix. Unfortunately, they are the least likely to realize it! LOL

Unlike some, I don't care about testing for it before the baby comes. I find the idea of parents who don't want autistic children being "stuck" with them a far worse prospect than abortion. If they don't want the Autistic baby that bad, I don't want them having it either. I don't have any feelings toward them, but I wouldn't want any child to have to live in that situation.

I would rather the test tell them before hand and test the embryo as early as possible, but I'm sure they are aware of the ethics fallout and will do whatever they can to achieve that. Research labs typically don't deliberately create ethics time bombs. It's a waste of money.

Anyway, we can speculate all day long. I just keep reading the research publications and waiting to see what happens. In the meantime, I sit in my veal cube where socializing is not required and do the job that pays for my interests. It's the same thing my NT co-workers are doing.

What about testing the parents first and telling them the odds of having a child with autism? People who do not want children with autism can choose not to have children at all then. Some people might actually want a child with autism, especially if they have autism themselves. This has happened in the hearing impaired community.

I am just against society pushing for an autism free gene pool.

Having a choice of a "wanted" child really does not help any adult with autism. The negative view of people with autism is what has to change.

Just how stupid does it seem with Indian couples aborting their baby girls just because they are female? same with autism.

I don't have problems with telling the parents and that is why I would want to someday see doctors be able to tell the parents before hand. If they want to have them, that's fine. I don't think society should be making those choices en masse. I am aware of deaf people and dwarfs wishing to have children like themselves. (Dwarfs, well there are some physical things there that cause me concern, but I'm no expert so I'm not weighing in on that.)

Not sure what you mean by a wanted child for an adult with autism? What did you mean by that? Yes, the negative views people have of Autism has to change. Maybe as more become verbal and have their say, people will stop acting like it is the monster in the closet and look at it logically.

Stupid as it may seem for Indian couples to be aborting their baby girls, what they used to do to them to kill them after they were born was much worse. Aborting is the lesser of two evils in that case. I don't want babies exposed to the elements until they die. Curing that problem of parents not running after so-called desired traits will probably take longer than any cure for Autism. Unfortunately, that problem has been around for a long time.

I'm also curious to see if the interventions mentioned above will help long term, but I think they will. And yes, examining how adults cope is invaluable- that's what some researchers such as Tony Attwood seem to be doing, and Attwood's book "A complete guide to Asperger Syndrome" is widely cited in this forum as being an excellent resource (I've read it, I'd certainly agree with this). Prejudice against autistic people isn't going to go away, so anything that can reduce the severity of the autism or its symptoms is a good thing. It would be nice if people on the spectrum could be accepted the way LGBT people or people of non-european descent (in US and Europe) are beginning to be, but I think the prejudice is far too deep. A gay or black person is fundamentally no different from any other person, usually makes a normal contribution to society and can be understood as such by the average person. An autistic has an alien mind, and in most cases (particularly with LFA) is perceived as being a defective who doesn't make any real contribution to society. Even savants or highly intelligent people with AS/HFA are defined in the popular mind by what they can't do as well as by what they can, and are seen as a small minority (which thet are- the ones that can cope remain unDXed and therefore effectively invisible). People have a deep seated loathing of people who are mentally defective and therefore possibly dangerous, and even benign autistic behaviours such as rocking or handflapping are interpreted as signals that the person is mentally abnormal and therefore potentially dangerous. I don't think this will ever change, and can't see how people on this site and others like it are so hopeful it will.

As for the boy in the newspaper, he was being threatening and abusive to his peers and adults around him, including incidents with knives, and was caught getting drunk and taking cannabis (this does beg the question how he got those things) all despite his parents best efforts to control him. It would be interesting to see where he is in 10 years time, but you can't say he'd have been better off without any intervention. He was in the paper as an example of a child delinquent, which probably wasn't very fair, but then the Metro is a right wing rag. According to the National Autistic Society there are a lot of undiagnosed kids, especially from low income families, who have spectrum disorders and end up like this (read that in a seperate article).

That kid may be anti-social or a psychopath in addition to being autistic. To blame it on autism and not consider the whole story is part of the problem with labels.

Society is pretty screwed up and what's considered normal by the mainstream is getting narrower and narrower, and it's nuts. To let an amorphous "them" decide is just bananas, and I doubt most doctors are going to mess with treatments that may be unethical.

Yeah, we'll see how these ABA kids are doing when they're grown.

Metta

You also have to consider that there may have been other kids (or even adults) who gave that kid alcohol, pot and knives. That's far more likely than the alternative that he went out and sought out these things. It's far more likely that a group of kids set him up, got him riled up and called in the adults saying he was being abusive to them at which point the adults probably touched him when they weren't getting responses and ended up getting a negative reaction. Bullies cause untold problems in society because society in the last 20 years has suddenly determined it's okay to do that. It's never okay to be disrespectful and they'd be fired for such behavior so its counterproductive to allow it in schools, but groups of people rarely act in a rational manner as a whole.

It's unfortunate that it happened, but it sounds like the parents were trying (and maybe for years) to control (read probably drug) the kid because the schools and society won't control bullies. That's actually a pretty pathetic statement on society.

Of course the kid could be bi-polar or other things that haven't been diagnosed. You never really get enough of the story in the news to make complete sense of the situation.

I think with the treatments we will find over time that some were fine almost by chance and some were way off. As they figure out more about the brain, they're going to find out things that will disprove some theories and make them realize they were only treating symptoms in other cases. That's happened with almost every neurological disorder they've ever worked on because they know so little about the brain. It will be interesting to see how it pans out. For now, I would like to see them actively researching the adults to find out what they can.

Early intervention is a good thing. The earlier and the better the therapies the more likely that they will make life easier for the kid that recieves them-- and I think thats the goal. An easier life in a hard world. Anything that makes a kids life easlier is worth it to me (well other than being one them crazy mayrtr parents on autism speaks... I can never die! etc. They were just nutso) because having autism and any disorder is hard. Thats why having a kid with something like autism is hard-- because its hard on the kids, not the parent. Parents are grown ups and can deal (or should be able to when they decide to have kids).

Not everyone chooses to use what reources and interventions they may have had, but at least there should be a choose. My brother doesn't use faciliatated communication because he feels it isn't worth the effort for him. I might not like that decisions, but it is his decision to make.

I dunno... sometimes I swear scientists are working not toward some realistic and hopeful future but the imaginary future they saw on Star Trek as kids. Stamp out disease, disorders, and difference, send us into space, control the weather, learn to transport beings molecule by molecule and travel through time besides.

Sometimes I wish they'd stop sending up rockets and predicting the future and use the money to cure the diseases we already have in living people right now.