I saw a post on a newsgroup from a person who said that a child in the family had been pronounced "cured". The child had done so well at therapy that the child no longer met the DSM-IV requirements for Autism.
How wonderful for the parents...to hear their child is cured because of behavioural therapy!
How awful that professionals are claiming these kids are cured just because they "act normal"!
So...was said child "cured"?
I'm very glad this person asked, actually! It shows this person cared enough to get some more answers!
Here was my reply (it's blunt, but well-meaning).
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They've succeeded in getting [child] to put on a good act of suppressing [child's] own issues and pretend to be a normal kid. That's all they've succeeded in doing.
This child is not cured. Don't let them kid you and don't kid yourself.
I wasn't even though I was in the same situation by the time I was 6.
Everyone thought I was cured too. My mother was in for the shock of her life when I hit puberty and had problems, and then hit the age of 18 when the stomach problems started getting bad again, which brought out the undesirable behaviour.
By the time I was 24, the unresolved medical issues almost killed me and my behaviours were really bad because I didn't know how to cope with the pain and illness I was feeling. I didn't eat or drink anything for nearly 3 months. It's a wonder I survived. The anxiety went through the roof and my mother lamented that I was "becoming autistic again". Fortunately, I was living on my own, so I could just ignore her phone calls.
That's when I went online and learned that autism cannot be cured...that all I had learned to do with all those therapies was how to suppress my own feelings and reactions without being taught how to effectively handle the issues I was having.
If anyone ever wonders why I have such a problem with behavioural therapies and such...that's why.
They don't treat *everything*...and certainly not the most important things. Pretending to be normal doesn't cut it after awhile. I found this the hard way.
It all came back and bit me on the butt pretty hard when I was 24. I pray this doesn't happen to your family member when those newly learned behaviours aren't helping [child] deal with the core issues that have never been dealt with and may become major problems in adulthood.
If that is the focus, if this is what is considered a cure...then the medical profession is seriously failing people on the autistic spectrum.
Miserably.
...And parents are paying lots of money for this damage to be done too!
For what? So their kid will "act normal" and be social?
Do we ask diabetic, epleptic or kids with cancer to just "act normal"?
Do we force them to deny their physical symptoms and just put on the show of being normal so that others don't have to deal with it?
Do we force colour-blind kids to "pretend to see colours"?
Of course not! What a ridiculous notion, isn't it?
....So why do we do it with autism? That's my question.
Because it's being diagnosed based on what others *see* (a bunch of behaviours)...*not* on what the child is actually experiencing (which is actually a lot more than just a bunch of behaviours in most cases).
It's not right. It's not ethical and it's certainly not beneficial to *anyone* in the end. Not the person, not the family, and not society.
One can only deny himself for so long before it all catches up.
To deny someone else what is really needed to improve his or her quality of life in *all* aspects (not just the social ones) is nothing more or less than criminal.
(Yes, I do feel strongly about this.)
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I got a reply from the person, thanking myself and others for the opinions and was very nice about my blunt reply. Basically, the child's parents had not been told that anything could crop up later. (Are they ever?) The parents would be interested to know what may happen later on.
So I was nicer when I wrote back:
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6 is still a good age. Actually...with [child] 'doing so well', your relative may be able to question [child] on things such as headaches, queasiness, vision problems, sensory issues, frustrating events, etc. [Child] might actually be able to answer, given the right questions. Finding any core issues does require some detective work, though so parents should be prepared to do some gentle "digging".
For me, I always felt nauseous, but because I always felt that way, I didn't know that it was a bad thing, and that it could be helped. I thought I just had to suffer with it all the time because everyone else likely did too. For years, I told Mum that "my throat hurt" since nausea seems to manifest itself in my throat. I couldn't make the connection to stomach until my late teens.
Same with the headaches...I thought everyone got wicked headaches every Sunday until they started happening to me every single day when I was 14. I finally told my mother after years of this and all the testing was done.
Your family member might not know to ask for help because it may be just 'normal' for [child] to feel a certain way, which causes the stress but [child] cannot articulate it well.
In your family member's case, [child] may have a racing mind (millions of thoughts going through one's head at once that he can't shut off), digestive problems with certain foods, headaches, sensory things like hypersensitive hearing, smell, etc. Buzzing lights or noisy vents may be a problem, etc.
[Child] may also have allergies or food intolerances which don't immediately react, but may do so over time. For example: I have this problem with anything that has soy in it. I can eat it for a while in small doses, but it builds up in my system and makes me quite sick after awhile. Caffeine on the other hand reacts right away with me. I immediately feel the illness and such that I get with caffeine.
These things are small and probably don't seem like much individually, but they do add up eventually, which causes a lot of stress and resulting meltdowns or problems in behaviour (naturally, this would happen to anyone).
One can only take so much 'overload' before one just can't do it anymore. It's like having a bunch of people bothering you at work all day until you just want to scream and leave the building.
That's where you'll likely see frustration and what professionals call "regression" into coping behaviours as time progresses.
Frustration may also stem from things in school as [child] gets older - kids being bullies, subjects at school that [child] may not be good at (Math was my big problem - I just couldn't 'get' it). sensory things such as the buzzing lights, etc. Grade 1 isn't so bad...but watch with the later grades. For me it got worse each year.
Kids pretending to be normal, thanks to said therapies, will hold these things in for a very long time before a big meltdown hits and no one can figure out why.
The small thing that seems to trigger a meltdown, may be only the final thing in a long line of things that have been adding up. The final straw, so to speak.
It's best to keep an eye out for that.
> I
> don't get the impression from [family member] that anybody's ever informed them of
> anything like what you state here, and that's terribly unfair if yours
> is a common experience for "cured" autistics.
No one would have informed your family member of this. No one told my parents either.
Why would they?
The problem is, most professionals are still looking at outward "signs" or behaviours. They're still not seeing the whole picture.
The signs go away, therefore the child must be cured, right?
I only found out that is not the case because it happened to me hardcore. It was definitely a shock to my parents who thought I was "cured" too! Who would have guessed that this might be a lifelong thing?
What a surprise it was when I found out autism is much more than just a collection of behaviours. It took me a long time to realize that my sensory, digestive and "racing mind" issues were actually my core issues which triggered my "behaviours". Working with those things and finding ways to help myself actually proved to be more helpful in the long run.
However, one thing my mother *was* told was that there was the possibility of regression once puberty hit. (Again...behaviours only)
There's something else to watch for: puberty means another re-wiring of the brain for all young people. In the case of autistics, who are already differently wired, this may a good or not so good change.
It actually was a good change of wiring for me. It went on from about age 11 - 24. Things improved a lot once everything was all sorted out. I still have my issues, but they're nowehere near as bad as they were when I was a kid because I'm learning to deal with my core issues positively and effectively for me.
Some folks have worse issues after puberty. It's kind of a crap-shoot for each person. Luck of the draw, so to speak.
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I love it when people ask these questions on the autism mailing lists which are largely populated by autistic people. It's amazing what people are not being told with regards to the therapies their children are subjected to!
By asking other autistics, it means these folks actually care enough to know more and listen. If more people (especially professionals) would do that, I think there would be some truly great things happening for autistic people of all ages!
Just my thoughts on a very hot Monday in July!
