Not a cure, just appropriate support

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Thanks, just looking at the SOMA stuff now. Interesting for sure.

Is it easier if we say our sons are not Autistic but..something else?

No, that's not my assertion. My assertion has to do with the parents who actually do fund and promote Autism Speaks. As an aspie, if I had meant the things you are asking about, I would have written them explicitly.

The people I am talking about do exist, though. Even here, every now and then we'll get someone who starts out by posting something like "woe is me, I'm burdened with an autistic kid, what did I ever do to deserve this burden?"

Then they get told by everyone that they should treat their child as a gift rather than a burden, and most either get it or they leave in short order.


One neurotypical parent seemed to find my suggestion a good one, and two others provided potentially useful information on where things like that were already being done. That seems to me to have been a constructive exchange.

Cheers Caitlin. My son is a diagnosed person with high functioning autism and I'm highly offended that a parent with an undiagnosed child is already looking for a cure and a reason to blame autism for her son's (and likely moreso her) issues.

I hope some of her work helps in some way. I think she's an amazing and inspiring mother and exactly the kind of mother that I want to be for my son.

I fixed my profile for you, Bauhauswife. Now I'm no longer an undiagnosed Aspie but a mother with a diagnosed autistic child. I hope that fixes your issue. I do know and have personally experienced the "now you're possibly autistic so can't have a valid thought or idea that would assist me because I believe you all need a cure for your disorder" issue before. Hope that provides you some clarity. I'm sorry you have such a profound hatred for something your son is not even diagnosed with. I can understand being angry at the world because things haven't worked out the way you planned them, though.

Nostromo, that's a valid question but I cannot legitimately answer it, since I'm not autistic. When my son grows up, he will be entitled to answer that, and many other questions. I hope people will be listening.

As I mentioned before, I think as long as we all are given the same "one autism fits all" label for our kids, we are going to keep coming up against these conflicts and hurt feelings. It's one of the reasons I still oppose the elimination of the Asperger label from the DSM, and I hope that it doesn't go the way it looked like in the last draft.

It would certainly help if we knew more specifics. To me, the description of your son doesn't really sound like Asperger's or classic autism; aspies don't lose their spoken communication skills, and "low functioning" auties don't tend to gain them in the first place. However, it seems to me that doctors sometimes use the autism diagnosis in cases where the way the world looks from inside the person's head might not be the same as the way it looks to me or to a classic autie - kind of as a catch all for certain types of developmental delays.

Now, I can certainly imagine a situation where an aspie, autie, or even a neurotypical might regress somewhat in spoken communication. For example my daughter, not quite three, started speaking more a couple of months ago when my mother visited, and started regularly speaking in complete sentences for the first time. After my mother left, my daughter's use of complete sentences dropped substantially. I'm pretty sure I know why this happened: my daughter needed to use words to communicate with my mother. With me or my wife, we can usually figure out what she wants quite quickly without words, so she doesn't have to take the trouble to speak.

However, my daughter's comprehension didn't regress at all. It's not that she actually forgot anything she had learned; it was just that she got out of the habit of talking.

It sounds like your son's case is different: he seems to have actually forgotten things that he learned. I'm not an expert, but to me, that sounds more like Childhood Disintegrative Disorder - or perhaps something like Rett syndrome, except that Rett syndrome generally only happens to girls.

And I don't think most people even here would have a problem with "curing" Rett syndrome. It has a known and specific genetic cause that results in deficiencies in a particular protein. It causes symptoms that go well beyond the brain. The speech delays and regression might just be the result of insufficient motor control of the mouth and throat - if you can't breathe properly, it's going to be difficult to talk properly. If there were a way to repair the gene, I would say do it.

For things like "regressive autism" or even CDD, though, I have to say I'm a bit more reluctant to judge. Many of us on this board know all too well that we may have things going on inside that people on the outside never see and incorrectly assume don't exist. Sometimes people who are unresponsive on the outside are happy on the inside; sometimes they are not. It's hard to tell without meeting them.

As much as I understand what everyone here is saying, it still surprises me that no one seems to feel for the difficulty of the situation this parent faces with her child ... Aren't we a support forum first, activist second?

R.E: Regressive Autism

My sibling lost words and skills and is autistic. But she had very clear differences from the start. She certainly was not a normal baby. I think losing words is normal in young age for autistics. But I'm very skeptical everybody called autism actually has autism and not a disorder that mimics it, especially the type that are normal and then just lose everything.

There is a theory that the reason skills are lost early on is from sensory overload. The autistic perceives too much and shuts down from things, so that we can't make eye contact for instance because we perceive too much. I don't think this is a universal answer or theory but I think it can explain some things and perhaps a lot of children.

Secondly, I do not like the hostility in this thread. It makes me sad.

I really like Caitlin's post, by the way. It explains the aversion to a cure very perfectly. I certainly call autism a disorder but it is beyond my comprehension why a disorder must be "bad". If you look at this forum you will see lots of high functioning people struggling. You will also see people who are described as having severe autism make very insightful posts and saying they do not want to be cured.

Wanting to cure one's child is akin to asking for a new child. You can wish for a cure for their communication problems but curing their autism would just be... it just doesn't make any sense to me! I have stated I wanted a cure on here before so maybe I'm a bit of a hypocrite, however, but that is at my lowest points.

I wouldn't be so quick to assume that it used to be easier. You hear about the CEOs; you don't hear about those who ended up in mental institutions, or prisons, or dead.

However, there is of cours, one obvious difference: the current generation of kids are getting diagnoses. When I was growing up, I got negative labels, sure - but only from other kids. To adults, I was at worst just "shy". Now, with an official diagnosis, aspies start out laboring under a presumption from teachers and other adults that they are inferior. That's not an easy presumption to overcome.


I learned a lot more from playing D&D and related games in college than I learned from classes (granted I spent more time playing D&D as well). In addition to a very useful working knowledge of probability and statistics, I learned most of my social skills from it, which perhaps makes it particularly useful for aspies.

It is not offensive to want to end suffering.

This is the kind of scary talk that leads into a dangerous eugenics model. If these children cannot speak, how can you say they are suffering? Are they "suffering" because they are frustrated that people are not understanding them? Are their parents unable to learn the language they are speaking (and they are speaking whether or not the people around them are understanding is another thing)? Or is it the parents who are suffering?

Nah. Not scary. I refer to both parents and child. I'm just saying that's what a lot of people mean when they want a "cure", they don't mean they want a new child. Speaking difficulties aside there are other issues that autistic kids can have that cause them pain (suffering), such as self injury, seizures, sleep disorders, stomach problems, serious allergies ... and to want a cure is to just want to fix all that.

I understand what you are saying. A "cure" is a way to remove autism. If it is the issues the children/parents are facing then we are talking about a solution to issues and not a cure for autism.

I don't think all autism is quite the same, so a "cure" may be wonderful for some and tragic for others .... Though honestly I don't think the vast majority is "curable". Preventable ... that's another matter since I think the environment/pollution plays a part. There was just so much misunderstanding and animosity in this thread it got to me, I feel like my brain is spinning.