Autism - A "Recoverable Disorder" ?

[scrub-jay]

Maybe medicine has a much more specific definition for "cured" where many of these sites mean "able to function" or "dramatically improved function"... but the medical community would still argue that although the individual can now function much more "normally," they are not "cured" or "recovered" ?? In some ways it seems like it is the medical vs. lay-person's definition of "recovery."

[PrincessFiona]

Definitely food for thought. I know in the social skills group Andrew was a part of, they worked on teaching kids *normal* behaviors. This included looking people in the eye, opening doors for others etc. It didn't make the kids understand social nuances better or give them an appreciation for why they needed to perform a certain way ... it just taught social norms.

Is that recovery? Kind of.

Andrew's best friend was dx with Aspergers at 3. He tested not on the spectrum a couple years ago based on the tests and the tasks expected.

That being said, this kid is definitely on the spectrum. If the tester had seen he and Andrew at the airport with me he would have changed the diagnosis right back. I had to walk two 171/2 year old boys through from beginning to end. I had to explain 20 times that we had to take off shoes and why, had to almost hold his friends hand through security and right up to the gate.

In the exact situations they practice for, they are ok. Bring on new, and the autistic behaviors come out.

Still, I see this training as *recovery* in the way that someone might recover from an eating disorder, alcoholism etc. The person needs care from time-to-time but their acctual behaviors can improve. Sadly, behaviors don't = understanding...they just make the person act more normal.

Ramble ramble

Kris

Hmm...I'm going to hold judgment for now because it sounds very much like the treatment my now-9-year-old sister-in-law went through. She was diagnosed "on the spectrum" somewhere between 2 and 3. Or maybe closer to 4. I cant really remember at this point, but it was pretty young. She had little tolerance (or really none) for anyone outside her immediate family and eventually got to the point where she would even try and spend as much time away from her mom as possible. She spent HOURS in front of the computer. Basically had very few interpersonal skills and was retreating into herself. Was visibly uncomfortable around lots of people, especially strangers. Had little tolerance of unfamiliar places. Talked minimally, etc.

I don't know the details of the treatment, but it involved different therapists and eventually special ed at the local elementary school. I know my MIL started interacting with her ALL THE TIME, even if my SIL wanted her to go away. She made a lot of progress and a few years later was retested. She still has issues but they were not enough to put her "on the spectrum" anymore. She eventually was able to transfer out of the public school special ed program and into a normal kindergarten class at the Catholic school her siblings go to. You can tell she is still different and probably always will be. She still has a low tolerance for unfamiliar situations, food, locations, etc. but it is getting better. And you can tell she still likes to be alone, but she enjoys playing and being around others now too. It has taken her a long time to get used to N...she was very very cautious around her and has warmed up each time we visit.

So is that recovery? I don't know. Her issues are better but I wouldn't say 100% cured. When all of this was first going on, she wouldn't even acknowledge my presence when I visited. Just a year of the therapy made a huge difference. I wont claim to be an expert, but I think the major problem is "Autism" is such a catch-all term and the spectrum is WIDE. In her case, I would say "early intervention" helped, though.

[PrincessFiona]

So. So. Sorry Jenn. Call anytime.

Hugs,

Kris

[Thirteen]

PF, I know exactly what you mean. My brother understands what is the social norm, but in times of stress or anxiety, cannot pick up on social cues. That's just the way it is.
Having said that, my parents were incredibly supportive and did auditory treatment (SUPER controversial at the time), behavioral therapies, and tutors where it was needed (reading). He took the driving test at 18, and has his license - there are certain roads he avoids, but he can drive himself to activities, and enjoys it.

Rapunzel - Don't lose heart: I hope you find the answers you are looking for. Please be kind to yourself!

[scrub-jay]

I have limited experience with the spectrum, but I guess I figured that although many can learn how to function "normally" in society, the autistic mind still processes and perceives the world a little differently and poses different challenges? If I'm dead-wrong, please correct me, I am really fascinated with the topic.

[Deebs]

So this is where the debate comes in. The advocates of a cure or recovery being possible with our current knowledge of Autism do not believe it is a neurological disorder. Interestingly, they often have the same opinion of ADHD. They also don't believe it is in any way genetic. They think it has biomedical causes, largely heavy metal exposure. Going off this theory, they treat with dietary changes, and different methods to rid people of metals.

The more conventional treatments (that can have great success) focus on PT, OT, early interventions that increase function within society. There is thought that children with mild symptoms may "come off" the spectrum, but some argue that those individuals were misdiagnosed or over-diagnosed in the first place. If I had/have a child diagnosed, I don't know what I'd do because I really think that, like any illness, you don't really know until it happens. I do think that ths is an incredibly difficult diagnosis or any family to deal with (and I admire the courage of the families here that are dealing with it). Unfortunately, I think those advertising cure and recovery are out to make money. Their ideas offer families false hope at a great expense. Im not saying we should give up on Autosm or people with Autism, but rather we need to carefully assess where research efforts should most be focused. As DH says, if a drug company knew that a supplement or detox could cure x,y, or z, they will bottle and sell it, and they have done that in some cases. If you google Autism Cure, you will find some very interesting sites.