''Cure Autism'' Rethink...

[Crossbreed]

I have two severely LFA children who received their diagnoses in the early 2000s. I received my own diagnosis of Aspergers in 2007. Before my dx, I thought that LFA and autism were the same thing, just as many NTs continue to, today. Since learning about autism being a spectrum (that included me), I have to agree that autism (alone) is not a condition that needs to be cured, but I do see a worthwhile parallel that needs to be considered in the autistic community.

Where NTs see autism as an injury to otherwise healthy NT children, I have concluded that LFAs (and other severe comorbidities) are injuries to otherwise healthy Aspie children.

Like everyone here, I take offense at the notion of autism being labelled as a defect. But if we could momentarily set aside our knee-jerk offense and exchange their terminology [NT vs. autie] for the more enlightened spectrum, uninjured vs. spectrum, injured, we would have to agree that there seems to be a contemporary, as-yet unconfirmed environmental component that is responsible for said injury.

While I abhor the search for an autistic "gene" to facilitate selective abortions, I applaud the pursuit (and eradication) of the agent responsible for this neonatal insult. Success in that arena is actually pro-autism, if you think about it.

Accordingly, I have been following so-called autism-prevention research, while applying the exchange of terms above. One recent finding says that it has been proven that children are not born with [severe comorbidities (my words)].¹ (If Autism Speaks would take that to heart, they would abandon their treacherous search for our defining gene.)

I think that our rallying cry should be, "Cure severe comorbidities...!" instead.

¹ Duke University, 2017 (I have a PDF abstract, but I don't know how to attach it.)

 

[OrSomething]

What do you mean by injured? How do we determine whether someone is "injured"? Just because someone isn't always able to communicate in the neurotypical way, or able to learn things to the degree that is expected of us, that doesn't mean they're broken or need to be cured. Besides, many so-called "high-functioning" autistic people have things like depression or anxiety that make life extremely hard for them. Would they be considered injured?

 

[Crossbreed]

@OrSomething , prior to the Generation Y (the Millennials), autistics were more capable of attaining self-care in adulthood. Even Dr. Lorna Wing made that distinction.
"Youngsters with Asperger's syndrome are speaking up for themselves. Many see it as a difference not a disability, but that is a good and bad thing. For those with classic autism – like my Susie – it certainly is a disability."

You aren't doing my children any favors by denying their severe (and possibly avoidable) deficits.

If someone gave you a black eye, would you embrace that as your new normal? How about a scar?

Seeking to better the health of auties (if possible) is not even remotely a form of genocide. Quite the opposite, it is medical due diligence.

 

[Fitzo]

I agree that a defining gene could possibly result in people having abortions. However it would also make diagnosis of others who go undiagnosed or misdiagnosed much more definitive. This in itself MAY result in less comorbid conditions like chronic depression and anxiety.
It's a moral dilemma.
And I can imagine that for parents of autistic adults who are violent and completely unable to ever be independent, they probably wish there had been a choice. There will always be pros and cons for this type of research.

 

[OrSomething]

@OrSomething , prior to the Generation Z (the Millennials), autistics were more capable of attaining self-care in adulthood. Even Dr. Lorna Wing made that distinction.
"Youngsters with Asperger's syndrome are speaking up for themselves. Many see it as a difference not a disability, but that is a good and bad thing. For those with classic autism – like my Susie – it certainly is a disability."

You aren't doing my children any favors by denying their severe (and possibly avoidable) deficits.

If someone gave you a black eye, would you embrace that as your new normal? How about a scar?

Seeking to better the health of auties (if possible) is not even remotely a form of genocide. Quite the opposite, it is medical due diligence.

I want to say, "Well, we should let 'low-functioning' autistics speak for themselves." But I know what you'll say: "But they can't communicate, so how can they speak for themselves?" That's a good point, and I think we should strive toward helping non-verbal autistics communicate in whatever way possible. But I don't think that has to mean a total cure.

And I can imagine that for parents of autistic adults who are violent and completely unable to ever be independent, they probably wish there had been a choice. There will always be pros and cons for this type of research.

Just because someone is violent and unable to be independent doesn't mean they don't deserve to live.

 

[Fitzo]

I want to say, "Well, we should let 'low-functioning' autistics speak for themselves." But I know what you'll say: "But they can't communicate, so how can they speak for themselves?" That's a good point, and I think we should strive toward helping non-verbal autistics communicate in whatever way possible. But I don't think that has to mean a total cure.


Just because someone is violent and unable to be independent doesn't mean they don't deserve to live.

Where did I say they don't deserve to live?

I'm not saying people with downs syndrome don't deserve to live either, but parents are making the decision about whether they have the resources both physical and emotional to take on such a lifelong commitment. And I know that people have ended up taking their own and their child's life because they were so concerned about what would happen to them once they were no longer around.
It's not quite as simple as life or death!

 

[Crossbreed]

But I don't think that has to mean a total cure.

Injury prevention does not in any way constitute a "cure," wanted or not. I think that we are talking apples & oranges. Parents are expected to protect their infants from avoidable & unnecessary trauma.

 

[Crossbreed]

I think we should strive toward helping non-verbal autistics communicate in whatever way possible.

For non-verbals, there is a difference between mutism and infantilism.

In simple mutism, that person will conduct an age-appropriate dialog, once they find a working alternative to speaking, such as a keyboard.

With infantilism (as in the case of my 23yo daughter), her thought processes are those of an 18mo. old and alternate forms of communication have proven to be futile.

 

[Crossbreed]

What do you mean by injured? How do we determine whether someone is "injured"?

Another evidence for "injury" is if someone has conditions that are unprecedented in their family history. If that happens in high numbers at the same time, it is even further evidence of a contemporary environmental insult.

Conversely, if someone has Aspergers and they see it in their parents, grandparents, their children, etc. Their condition is more likely to be hereditary, not from an injury.

 

[Chance]

Another evidence for "injury" is if someone has conditions that are unprecedented in their family history. If that happens in high numbers at the same time, it is even further evidence of a contemporary environmental insult.

Conversely, if someone has Aspergers and they see it in their parents, grandparents, their children, etc. Their condition is more likely to be hereditary, not from an injury.

I like how you think...
You are fair and balanced and you try and be informative without being too harsh...
I also respect you deeply because you deal with a side of this that I often overlook... LFA is something I know very little about, and it makes me feel a little selfish to gripe about anything when I just pictured you daughter in my head... Its not pity, its not me feeling sorry for you, its a respect for you that I don't even know how to put into words. Thank you for making me see something I was totally over looking.

 

[Crossbreed]

I agree that a defining gene could possibly result in people having abortions.

Besides the wanton destruction of LFAs, its holocaustic effects would be spectrum-wide, that is, everyone on the spectrum, not just LFAs.

If LFAs are created by a secondary, neo-natal insult, it misses the root of the problem, altogether.

Here is a thought experiment:
Pretend that these babies all have red hair, instead of autism. One-sixth of these babies are likely to exhibit Xmen-like super powers, but another sixth are likely to be institutionalized for life. This proposed solution is to terminate anyone who has a gene marker for red hair in hopes of eradicating the latter!

The more humane, medically ethical approach would be to zero in on why so many red heads are recently failing to develop, not the fascist "solution" given above.

 

[Crossbreed]

Another evidence for "injury" is if someone has conditions that are unprecedented in their family history. If that happens in high numbers at the same time, it is even further evidence of a contemporary environmental insult.

The "injured Aspie" view is formally maintained by one Dr. Martha Herbert.