Not a cure, just appropriate support

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There are such schools. They are just few and far between. Temple Grandin has started opening schools using her name, for high functioning autistic kids. They have a FB page and a website. I believe people can inquire about opening one in their community. http://www.templegrandinschool.org/

There are also charter schools for kids on the spectrum. That is another option for parents to start on their own.

Next year my son will be attending a local private school for kids who want a university entrance track, but cannot function in typical public schools. It was started by parents much like us, who knew our kids would never be able to reach teir potential in public school. It will cost us nearly $15,000 every year for the next 10 years - that's $150,000 before he even gets to University. And we are a middle class family. We could spend that on finding a cure or biomedical treatments etc, but at the end of the day I don't want a new son. I want the one I have, and I want him to have all the opportunities and prospects he desires in life. THAT is where we will invest our money.

So for parents who are really struggling with education issues for their kids, you DO have options, but none of them are easy. We currently homeschool, and it's been a lifesaver for my son. You CAN open your own school, but it is obviously a TON of work. You need to decide if it's worth it for you.

I don't attribute all my son's gifts to the AS. His IQ, for example, would probably be higher without the AS, since it would smooth out the components that drag the score down. But. His greatest gift is that he truly and really thinks differently than anyone else I know, and anyone else he knows. He always has this angle that seems to come completely from left field. That, to him and to us, seems like something he couldn't do if his brain wasn't wired exactly the way it is wired. "Cure" the AS and you change the brain wiring, or at least that is what we all assume. He doesn't want to change the brain wiring. He wishes he could have an easier social life, but not enough to give up being completely unique. He loves that completely unique side of himself.

But, yes, as you pointed out, all the discussion is pretty academic. If it is a condition of how the brain is wired, then there is no cure other than the one none of us want or are willing to support.

I do think there are ways of improving outcomes. Of removing layers of comorbids until much that inhibits the child from realizing his or her potential is gone. I think we can all support the idea of less disgraphia, less anxiety, less depression, less tourettes, and less invisible-barrier- that-keeps-my-child-from talking (one can hope the last is in the same category as the others, and not another display of different brain wiring). I think that the disabling comorbids to AS are worse for this generation than they were for the large group of people who went into adulthood never knowing they were AS, and getting along OK more often than not without all we have to give our kids. My sister told me yesterday her CEO is now out as AS; I can't say that guy suffered from not having supports in school like our kids NEED. Something is different. I would like to know what.

There are some good options in my area, too, but it helps that (a) there are a lot of people here, (b) there is a large AS cluster here, and (c) a lot of families in that cluster are financially comfortable.

We've been lucky in the public school system and my son wants to stay in it. Otherwise, I would have been looking at homeschool or other alternatives. Instead, my son will get to have some really cool experiences this summer like attending programming camp while living in a college dorm. We don't spend money on treatments, we spend money on HIM. But ... we're also really lucky. He has mostly conquered (maybe not the right term for a work-around, but it is how it feels) the demon of his worst co-morbid (disgraphia / hypertonia) and he isn't inhibited by depression, anxiety, or ADD. And a couple of years ago God/nature/whatever-you-believe-in placed a family with a great kid who shares our son's interests right around the corner. Cutest thing this past weekend, 3 quirky middle school boys and 2 younger NT sibling girls all playing Dungeons and Dragons ... maybe not the most productive session ever, but I heard a lot of happy laughter

I don't think so. I have a sibling with "full-blown" autism. She's certainly a lot happier than me. And yet her communication is atrocious.


Autism doesn't get worse. There is only room for improvement as you get older unless the child isn't being treated right. It's a stable condition that only can seem to get worse by stressors, excepting for the early years with regressive autism. Talking isn't everything. I wish talking didn't exist.

We don't know that to be true in all cases all the time. There is a serious question as to what is behind what appears to be regressive autism. Attributing to poor treatment is a cop out and unfair to parents.

As I've stated before, I don't get a lot of advice from our "professionals"... so I might have... misinformation, or incomplete information... but I was told that my son's asperger's would only get worse and become more apparent into and during his teen years... is this not true?

I think worse is a misleadig term. A teen has a lot more stress factors to deal with, and certain comorbids come more fully into their own at this time. In my son the AS is more obvious, but also less disabling, now that he is almost 14. I have never felt better about his future. But we did a lot of hard work getting certain things dealt with before the hormones kicked in.

It's good to hear that DW... I was really worried about what I might have in store for me.. Ty, Ty, Ty...
We see the counselor today... and I do plan on telling him that he hurt my feelings about poo-pooing WP.....

Good luck!

FYI, kind of continuing the thoughts about the teen years ...

Some of the things to watch for and try to settle before hormones rage, real quick since I'm supposed to be working:

1) Anger and stress management
2) Self-knowledge on the lead up to sensory overload, and steps for mitigating

Watch for:

1) Signs of depression
2) Signs of rage that isn't related to sensory or situational overload
3) Bullying and inappropriate school placements
4) Anxiety issues

I think it also helps my son that he decided he wasn't going to let his head go into the whole dating / girls thing. He pushes all those thoughts out of his life because he thinks they would be too distracting to his longer term goals, and he thinks they make kids nuts (NT or AS). A decision he made before it all kicked in. Does simplify things, but I'm curious to how long that self-control can really last, because there is evidence he finds suppressing those instincts to be getting more difficult.

I wouldn't be surprised if there were neurodegenerative diseases, perhaps even unknown ones, which are sometimes diagnosed or misdiagnosed as autism.


Automatically attributing regression to poor treatment may be a cop out. However, poor treatment shouldn't be dismissed as a possible cause, either. Parents are not infallible.

I don't disagree with that. But it depends on wether or not you see autism as a disability or difference, or both maybe.
Some very smart aspies I've known I would not see their Aspergers as being a disability at all, perhaps even a strength in some ways.
But these are the people you read about that learnt to read at four and all that sort of thing. My son was sort of normalish then its like an anvil fell on his head. Seemingly so different, that perhaps it is a different thing altogether; his autism and another childs ASD, even though some of the symptoms match.

So is your assertion that, because a parent would like a cure for their child's autism, that we are openly funding Autism Speaks and other genetics programs? That we are knowingly and willfully contributing financially to the development of a prenatal screening to facilitate abortion of children with autism? That we believe this to be the "cure" we all have in mind when we say that we would like a cure?

I can assure you that I have not given up on my son, and I will always be in his corner when it comes to fighting for his rights. He hasn't been diagnosed with autism yet, but when he is, I will be coming out of his corner swinging with everything I've got to makes sure he has every opportunity to achieve his fullest potential, and realize the biggest life that he can live.



I'm not sure if your post is just bait, or if you actually feel this much hostility toward NTs. Intellectually you must know that this type of dialogue isn't helping bridge the gap between Aspies and NTs. It would be nice if the world would embrace the differences in non-NTs, but the entirety of humanity isn't going to shift their level of consciousness for a group of individuals that represent less than 2% of the population. We're still working on racism for Pete's sake! Humans can be mentally small, and selfish creatures even to other NTs.

Seriously? So all of your previous hating on autism and demanding a cure for your child who is so debilitated by autism has no diagnostic basis?! Wow.

Coming from an undiagnosed Aspie??? There are a lot of those here, and they seem to be the most hostile-to-NT members of the board. Just an observation.

I'm aspie, but I live on your moon. Much of what has been said on this thread is tragically near sighted.

Nostromo, my son lost all of his language too, he had about 20 words at 18 months then after that he just spoke in letters and numbers for 6 months before he started slowly regaining words. He knows a few hundred words now ... he learned a lot of animal sounds, shapes and colors before regaining anything particularly useful and the words he lost were some of the hardest to get back. He's almost 3 and still can't put his thoughts into words, but he can identify a lot of things he sees. I hope as much and more happens for you and yours soon, I know what it's like to suddenly realize your child has lost language.

As for the original topic, I think the word "cure" is oversimplified and problematic when applied to autism.

Bauhauswife, I understand that this discussion is getting heated, but if we back up for minute, and empathize with people on the spectrum who CAN communicate and ARE communicating their deep discomfort with talk of "cures", then we come to a place where we can to the best of our ability put ourselves in their shoes.

Imagine tomorrow that you woke up and discovered that almost no one understood what you were trying to get across. You have not changed - you are who you have always been. You may have other challenges in your life - maybe you suck at math, maybe you are a bit clumsy or uncoordinated, maybe you are prone to anxiety. But you are still you. You have important things to say, you have meaningful experiences to share, but most people seem to take everything you say the wrong way and don't like being around you very much.

Then an expert appears and says they can cure you, but it will mean a radical overhaul to your neurology to the point where you may not even be the same person by the time the cure takes full effect. You won't be YOU anymore, but at least others will be able to tolerate and understand whoever is left inside your body.

Would you be jumping at the chance to take that "cure" - or would you desperately wish there were people advocating for better understanding between you and the rest of the world? People finding ways to build bridges between you and the NTs, to spread a much more profound awareness and understanding of WHY you communicate differently, so that over time, you encountered far fewer communication barriers, and found that people understood and empathized with you more.

Which of those "cures" would you want?

I think the vast majority of us would say we want to be ourselves, and we want others to understand us, and us to understand others. We don't want to take a pill and radically alter our perception of the world. We want the world to radically alter their perception of US, so we can move forward together.

When you tell autistic people that you want a cure for your (possibly) autistic child, many will take great offence to it. And I don't blame them, because if you put yourself in their shoes, it really is at its core - offensive.