Today's items are a few posts I made on a newsgroup in response to some comments:
The first was in response to a person who is fed up with these so-called "Autism Advocates" (see parents looking for cures, not autistic people advocating for themselves) and how they want their kids to be called "Children with Autism", not "Autistic".
> Suddenly it is "offensive" and "hurtful" to call a child "autistic".
> You're supposed to refer to them as "having autism" now. The parents
> explain that their child is not to be defined by their "disease" but to
> be understood as AFFLICTED by it.They want
> everyone to think of their kid as some poor disease-ridden soul who can
> be cured someday and turned "normal" overnight.
Yeah right...whatever, folks. I'm autistic and I don't mind being called autistic. Just don't call me late for dinner because I'm kind of obsessive about timeliness.
All joking aside, though, I believe that these parents may be trying to separate their child from autism in some vain hope that autism could be cured.
Who wants to accept that their autistic child is autistic, just like their colour-blind child is colour-blind, or their blue-eyed child is blue-eyed?
By accepting autism as part and parcel of their child and therefore not going away, those hopes of "cure" are essentially dashed. That, then, defeats the purpose of the cure crusade. Simple explanation to that one. One must cling to whatever one can cling to in their lives.
While someone may find a cure one day for future children, which would likely involve (what's that *nice* word for "genetic cleansing" again?) Eugenics, there will never, ever be a cure for currently autistic people unless you can magically change someone's entire nervous system.
[I read an article today after writing this, in the National Post which states that autism is Genetic. The head researcher says that there is no reason autism shouldn't be preventable in the future. How timely is that??]
That would be an interesting feat that would probably fix a whole bunch of real neurological problems like Epilepsy, Parkinson's, etc.
For the record, I do not agree with eugenics. Just so everyone knows. Some may say my not having kids is a form of eugenics...no, that's just me not wanting kids of any sort.
> Has anyone asked these kids if this is how they want to be seen?
I'm no kid, but I'm an adult who'd rather be seen as a "person with value" and not a "person with autism". Too much to ask? How about "human being with something to offer the world" or "person with my own set of skills and challenges" or maybe just "human being"? You can call me a woman, because I am one. You can also call me autistic, because that's what I am.
I tend to hide the fact that I'm autistic because I don't want to be discriminated from getting a job because certain folks out there (and you know who you are) have been painting autism as this "horrible epidemic" and that I'm "defective" and "unemployable" and "hopeless" because of it.
Really, I'm not ashamed to be autistic.
On the contrary, being autistic has given me the upper edge on a few things in my profession.
How many other folks can boast a photographic memory like mine, or the ability to come up with really creative solutions, or the ability to handle an emergency with no emotional BS getting in the way, get right into a project and excel at it, or who can sit at a desk for 8 hours a day and not mind?
How many "normal" people in their 30's look like they're in their early 20's because they don't have those awful lines on their faces that come with over-use of smiling and frowning? I don't need botox! My naturally blank expression keeps the wrinkles at bay. (Just a joke, but it is true...I have a pretty clear face)
Mind you, how many "Normal" people have to work twice as hard to do what other folks can do naturally?
It's the "bad press" that seems to be going on that I really don't need, thanks. That kind of bad PR is not helping me live my life!
I'm not "Rain Man", I'm not the kid in that book about the dog in the night, and I'm not an "epidemic-tragic-disease-that's-up-on-the-terror- alert scale-with-bird-flu", thanks.
I'm an autistic adult with some great things to offer...as well as some weaknesses to deal with (and like we don't *all* have weaknesses, folks!).
> Of course the parents want their kids to be "normal". They don't want
> anyone to think that their kid could be this way natively.
Many parents really do not want their children to have to go through the hell of being treated the way autistic people are.
Thus why they wish their kids to be normal and that is a good thing for parents to want: happiness for their kids and a release from some of the pain.
Other parents have this strange view that autism has somehow made their kid defective and taken away their chances at normaility...and it's those parents, I think, who do the real damage to their kids.
"Love the child but hate the autism"? That's a phrase I really have a problem with. Come on...that child is autistic and always will be.
Love it or leave it...or should I say "Love him/her or leave him/ her"?
Hmm. Another rant for another day.
> I feel sorry for all these kids growing up knowing that their parents
> are fundamentally denying who they are inside. "What you are is not a
> real person, it's a disease!"
I'm no Christian, but please let me say "Amen to that". Amen to that.
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The second is a little more heated and is in response to one of those people who profess sercury is the cause and Rosie O'Donnell wouldn't let her talk about it on "The View":
[Warning: Rant follows - read at your own risk]
Mercury, mercury, mercury. Does it cause autism? Who's to say?
In my case, it's purely genetic. It runs on my father's side of the family and quite a few family members are on the spetcum in varying degrees (all high functioning, however). If I have kids, they'll likely be autistic too.
My parents were against vaccines, and I didn't actually receive that dreaded MMR vaccine until I was 13....that's 11 years *after* I was diagnosed.
Why did my parents not allow me to get the MMR vaccine when I was a toddler? (Ready for this one?) Because it supposedly causes autism.
Parents in England at the time were being advised against this before my folks emmigrated from there to Canada in 1974. They didn't want either of their children ending up autistic because of that vaccine and the supposed mercury.
Well, what a shock when I ended being autistic anyway!
Why are so many children being diagnosed now, folks ask? Is autism on the rise? Is it an epidemic?
No. It's because more is known about it and the diagnostic criteria has been expanded immensely. That's all. No epidemic, no need to call out the national guard. It's an expansion of knowledge and diagnostic criteria.
Autism is finally being seen for what it is: a spectrum with a number of variations in symptoms, experiences and effects. They still have so much more to learn, of course.
Back in 1978, when I was diagnosed, they were hesitant to diagnose me as autistic because I was "too high functioning"...I was just "retarded", not autistic. I didn't fit the Kanner model completely, so therefore I couldn't possibly be autistic. It would be a doctor at a new Autism society that would finally diagnose me as high functioning autistic. I've got a 3 inch thick wad of paperwork with all of this documented.
In the past those kids that are now being diagnosed autistic would have been seen as a number of things to professionals, unless they were severely autistic and fit the Kanner model to the "T":
* "Poorly disciplined"
* "Retarded"
* Suffering from "Childhood Schizophrenia" and therefore treated with very nasty anti-psychotic drugs
* "Just a little eccentric"
* "S/he's just Shy"
* "A little awkward socially"
* ADD/ADHD
* "Just a misunderstood genius"
* "Just obsessed with something - it's a phase. S/He'll get over it one day"
* "Lost in a dream world"
* "Just a late talker"
* Numerous other things that it could be....
Look how many adults and such are looking at themselves now thinking they might be on the spectrum.
On the other side of the coin, how many cases really are autism? (Most don't want to ask this one, but it does need to be asked)
Many are genuine cases, but is this another thing like ADD where the teachers are recommending kids get diagnosed and medicated because these kids are a pain in the butt to deal with at school because the education system is so dumbed down that they don't bother paying attention?
Who knows?
One can argue the "cause" forever and yet there are kiddies growing up to be adults every day. Mercury, genetics, vaccines, signals from space aliens, toxins in horse pucky getting into the air (Yes, I heard of that one being used)...whatever it is, not everyone can claim the same cause.
It's not always mercury, it's not always vaccines, it's not always genetic and it's not always horse dung...but autism does exist in a spectrum of ability and those who are autistic are always going to be autistic, no matter what the cause, no matter what folks do to them.
The most important thing, in my opinion, is that these kids, no matter what their Dx, be treated with respect, acceptance and taught to empower themselves and work towards their own dreams with no fear of being impeded by folks because of some "disability"; real or imagined.
They should be taught how to accept and work with their differences to make their lives better.
Whether it's relaxation exercises to calm the mind, or ways to deal with sensory issues, these kids need to know that what they are experiencing is normal for them and that they can do things to help themselves and that others will be there to help them too. They'll grow up knowing how to help themselves and how to get any additional help they need.
They'll grow up with an outlook that they are not hated, any more than a child with epilepsy, spina bifida or MS is hated.
They'll not grow up with it in their minds that they are so defective and utterly wrong and should just die to save their parents and caregivers the "grief of having to cope with them".
The way I see it: if you cannot 'cope' with your child, you probably should not have decided to reproduce in the first place. I know, I know..too late now, right? What to do?
Sorry if that sounds blunt, but you chose to have kids. Deal with whom you get. Love whom you get. Help whom you get become an adult with a sense of self-worth and strong support.
Raising any type of child, NT or otherwise, is no picnic.
I know that. That's why I've decided not to have children.
Am I a coward, or am I a person who wants to save a child having to go through what I've gone through in my life?
Sure, I'm doing well, but was it fun growing up? Do I like pretending to be normal every day so I can pay my mortgage and work every day? Not really, but I do it because it's my responsibility as an adult and no one's going to do it for me.
Seriously...looking at what I see every day being done about autism, being done to autistic children and how autistic people are treated throughout their lifespan, I'm not subjecting a child of mine to it.
Based on my own experience as an autistic child, now an autistic adult:
I'm not allowing any child of mine to become just another statistic for some society to make money from.
I'm not allowing a child of mine to be potentially abused to "train his behaviours out of him" because that's what the Canadian government may be only providing funding for, thanks to thousands of other parents and agencies who "want" this type of thing to be the only treatment. (See Bill C304)
I'm not having other people treat my child like a piece of dirt because he's like his Mum and is autistic.
I'm not having my child be destroyed by the behaviour of other, so called "normal" kids, who, with their pack animal mentality, bully him incessantly because he's "different". (I'm certainly not subjecting my child to this and then him getting in trouble because he decides to fight back, because if he's anything like me, he will fight back!)
I'm not subjecting my child to a mother who cannot stand high pitched voices and would likely be abusive because of a very short tolerance to small children. My mother couldn't stand it. She never wanted children and has admitted it. She was good mum and kept us healthy and as happy as possible...way better than I'd ever be, but it still hurts to know I wasn't really wanted.
Yup. You got it right...I cannot cope with having little children of any type around me for a long period of time, NT or otherwise. Small children simply drive me nuts. I'd take the trials and tribulations of teenagers any day!
I don't want a small child of mine being subjected to a mother who's going to melting down ten times a day because the noise and such gets to be too much. It's not fair to the child. I doubt it would be very beneficial for my heath either.
Just because I *can* have kids, doesn't mean I should. I've made my choice.
Too many autistic children, teens and adults die every year by others who just cannot cope anymore.
More die by their own hand because they cannot cope with being so "defective", "tragic", "epidemic" (yup, we're right up there with Bird Flu...great self esteem builder, eh?), hated and pretending to be normal anymore.
I wouldn't want that for my child.
I believe that kids should be given the appropriate services and tools they'll need to cope so that they can grow up to be adults with a positive outlook, who know what to do when things get tough and have the appropriate support when they need it, who can do what they can do well; and who are not trying to pretend to do things they cannot (like be NT).
Adults should be able to be accepted forr who they are, get the support they actually need, no matter what their IQ, have resources available so they can pursue their dreams within their own limits and live the life they want to live.
Whether it be funding, education, help around the house, housing, help getting training for work if they feel they can work, communication devices, decent counseling, life skills coaching, companionship, instruction on things that adults need to know...adults should not be denied services just because they're over 18 or 21.
Autism does not go away, it cannot be cured and kids will grow up to be adults who will still need help, support, love and respect.
I know...too much to ask, isn't it?
This was probably too hot for this forum, and I doubt this would ever make to Rosie or Ophrah, but it's my opinion only and not meant to be taken by anyone as the "way it is".
It's just the way I see it and I could be totally wrong. I can accept that.
I just needed to vent.
Thanks
