A word of caution...cures... | Autism PDD

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After reading a few posts today, I did some free-writing & wanted to post it.  Hope it makes sense.  I am passionate about this, and sincerely do not want this to stir up some hot debate.  I just hope I can help at least 1 parent who may at this point feel so desperate to 'cure' their child, at any cost.  I know so many parents feel they are racing against time, when it comes to early intervention & getting their child to NT status ASAP.  It can be life-draining, and I'm sure parents feel like they are treading water, with no end in sight.  I hope this helps...


As a word of caution--there is no "cure" for autism.  I think if you are going with a goal of defeating, exterminating, stomping out, or curing autism, you may ultimately feel defeated.  While I think it's great when parents see progress with therapies (& by all means, I hope all of your children surpass anyone's expectations!), I would hate for them to feel depressed, or guilt, or anything else negative that may come from having a goal of ridding your child of their autism.  The reality is, regardless of what therapies or diets or other so-called treatments you may try, if a child truly is on the spectrum, he/she will always be on the spectrum. 

Yes, they may eventually be labeled as "high-functioning" etc., but parts of them will never be NT.  Again, if the original dx of autism is accurate--I feel strongly people who feel their child has been 'cured' of PDD were never truly autistic to begin with.  They most likely had SPD, speech delay, or other developmental disabilities.  We try our best not to compare dd to her NT peers--it's simply not fair.  While we look seriously at things like gross & fine motor skills, and address those via intervention (PT, OT, ST), we realize that her social, adaptive, & behavioral skills, etc. will be delayed and different from NT kids. 

We may seek the help of professionals for those issues, but we understand from the start that she may not achieve certain goals WE may have for her, in these areas.  Now, in OT, a goal may be to properly hold a pencil, say in 3 months time or something--that is a very achievable goal to work toward.  Having our dd approach peers with a "hello" or initiate play--well, we'd love for that to happen, but we can't put a time-line on it like her motor skills.  It's not to say she will never get to that point, it's just to say that catching up to her NT peers in areas of gross & fine motor skills is going to be much more attainable--especially in the early, younger years.

I worry a lot when I hear parents so fired up on curing their children.  I worry what will happen 2, 5, or 10 years down the road, when their child is still autistic.  How will the parents feel?  How will the child feel?  What is that family like at that point?  Our dd has had issues from birth, and for the first 2 years, we kept thinking "just a few more months of therapy" or "by her next birthday, we'll look back & laugh at all this..." etc.  We really thought our dd's issues & delays etc. were temporary.  In the beginning, we never thought that at age 3, she'd still be in therapy, attending spec ed preschool, and having the delays & other issues she continues to have.  Now, it's normal for us, and just a part of our special, beautiful, amazing daughter.

I wish I had known then what I know now...I wasted a lot of energy on how to "get over" the problems dd had.  Now, I'd go back & just take a deep breath, enjoy each milestone--regardless of how delayed--with pure celebration.  Each time dd would gain a delayed milestone, I'd be overjoyed--but was always looking at how behind she still was.  I felt like we were running a marathon toward "normal-not-delayed" status.  I wish I hadn't felt that urgency for her to 'catch up' & just enjoy even more who she was and what she was doing.  That is now our focus everyday. 

Yes, we still have bad days, we have more stress than the average parent I suppose, but we get through it.  We celebrate the good things in our life, focus on those.  We work on the tough things, and this board is great for me to sound off on.  I've gotten tons of advice & support here.  I love that I can come to vent, so that my concerns & stress don't spill over into my life and take over.  I'm glad it only took us about 2 years to get to this point--our dd is still very young, and we have plenty of time to build on her self-esteem, and to enjoy how she will blossom in her own way, in her own time.

I suppose with time comes acceptance, and I wish that for all parents.


I've learned from autistic adults that they like who they are. I started looking at my own son differently. He is one of the happiest kids I know, and I am not going to ruin that by talking and thinking he should be cured. He already has to work and play harder than NT kids, and that is difficult enough. The more I accepted the autism, the better things got. I think my words changed to. I encourage and believe in my son way more. I let him know how proud I am of him. He seems even happier. I can't control the future, but for now, my son is doing his best.

I am so proud. Thanks for the post Elle!

I understand what you say, BUT  I think every parent should push for the most. There is no cure for autism but there have been many kids who became indistinguishable thanks to the many hours of therapies they received.

Daddy

Daddy39339.5441087963

Inntense therapy is not the ansewer

i am a mum of 6 four on the spectrum i also have AS

yes autism can be modified or even silenced but only untill they reach adulthood then all the locked up emotions just come bursting out .

To change your child beyond regognition is wrong they are who they are and no matter howw intense or how many hours of therapy they will not get rid of it.

We do however learn to control and role play

differant situations reqiure differant personanalties

and learned behaviour is a big one for many auties

shell aspie and very proud to be

I am so glad to see your post. I also believe as you do...if the child is truly ASD there is no cure for Autism. Believe me if there was I would be the first in line...but there is not . When I hear parents say they "are cured" it has gotten to the point where I will not read the posts..I am sorry, but it reminds me that my son, who is 19, will not be rid of this autism...sure he has gotten "better" in some areas, but in others he has not..the behaviors may go away or fade, but they either come back or new ones come out.

I am all for the therapy and wanting the most help you can get for your child, because it will help in alot of areas, and make that child's life alittle eaisier..but Autism does not go away, and as I have said before the hardest thing I have had to accept is that my son will always have it harder than the "normal" person.

 I also feel that all the thearpy a parent gets now when the child is young, should be made the most of, because when that child reaches the age of 18 everything changes..all this help..goes away,the school starts the back off, regional center, medical, dental, EVERYTHING!  The fight for your children does not ever seem to go away, I guess I am saying make the most of each day, but remember Autism is not  curable.

Autism is a challenging way of being.  It is not being at ease in your body in the only world you have to reside in.  It is seeing things in a haze.  It is being confused when things are clear to others.  It makes a lot dependent, not all.   

Would it not be selfish for those who are independent to say it is an okay state for those who are depent as a result of this....autism?

Cure, to me is still a goal.  There is an afliction responsible for this.  We have not figured it out.  If we have not, why would some of us be upset at the thought some people have the goal of curing their children from this affliction.  We should remeber that so many of the children on this spectrum are seriously affected by it.  Several of us cannot just leave our kids in any school like most parents of their peers.  Their intelligence is clouded by the inability to communicate in the way that most people understand.

To be sure that my ds would be independent, be able to use his intelligence to serve himself in this world in which he has been created, not need someone else to be his guardian when I am gone, that is not a bad thing to want.  It should not be derogatory or shameful or be a source of ridicule to want all that and then some. 

For my handsome son to one day be attractive and desirable enough for a beautiful young lady to want to share her life with him and bear his children, those are expectations of typical parents but a wish, a prayer, a dream, that is in the realm of probably unlikely for most kids on the spectrum.  Let us all hope and pray for a cure for this thing....Autism.

Let's hope it ends in this generation and we can halt it for the sake of us all.  How many parents are stressed thin by the demands of autism?  How many siblings are affected by its stress?  A cure would be good. 

 How many able bodied independent young men/women who need to be cared for or guided with a fulltime staff can one society support?  What percentage?  A cure is my prayer.  So when the NT kids and HFA start having kids we would not have autism at a higher percentage than we have now.

  Have you noticed the percentage of HFAs that cannot work in the real world at the level of their academic accomplishment?  A cure would be good so some of us can go do other things maybe fun stuff or financially rewarding things or just worry about easier to deal with life stuff, like planning proms for these kids instead of worrying about what school would be able to tolerate them.  So a cure is my prayer.  I don't think parents of severely affected kids would not wish for a cure.

Concernedpa.

Edited to add: 

 I love and appreciate my ds as he is:  However, for his sake, any knowledge that would improve his quality of life would be good.  A cure is my prayer.  You never know what knowledge would come tomorrow.  A cure would be good even if it does not help those who already have it.  I agree that we should have support in place for those who already have autism but we need to have people pressing on working on a cure.

  

concernedpa.39339.7986111111I have to say I do not think it is wrong what so ever to want a cure..I so want a cure, and it angers me that there is not, especially when so many children are being diagnosed with Autism. I would love for my son to be "cured"...his life would be eaiser..But at this point I have to accept that there is not, and work from there. I honestly was making more of a blanket statement or warning, mostly to newly diagnosed parents, of the dangers of putting all your eggs into the 'cure' basket.  I guess my point was more of not forcing your child into a perceived NT status.  To not live & breathe everyday with the intent of curing or fixing your child.  To set absolutely unattainable goals for your children.  Some parents so despise autism & are fixated on 'fixing' their child, that is not healthy for anyone...and it can lead to them despising not only autism, but their autistic child.  This obsession, as it turns into for some parents, can & has led to abuse & even death of autistic children.  That is my greatest concern.

Second to that is that so much focus is placed on this cure, which who knows when & if it ever will come, that moneys are not being put into vocational & career programs, supports, etc. for our children as they become adults.  That should be a serious concern for all of us--wherever your child falls on the spectrum.  As it's been mentioned, many considered to be "high-functioning" or Aspies have a very difficult time living on their own, working, etc. or are unable to do so at all.  We need programs in place to help our children be accepted in our society. 

You can't put all your focus on your destination, without planning what roads you'll need to take to get there.  If we only work toward a cure, what good does it do for all the autistic children & adults now?  If we ever do get a cure, would it only be for embryos or infants?  How would going about the cure go?  Thoughts of the latest X-Men movie come to mind...would every person diagnosed with autism be required to be cured?  Would they want to be?  What then?  That's such a dark & unknown road--focus on what we do know.  Our children are getting older everyday...there are very little supports available to them in the real world.  Most of us can't even get our school districts to give us much help.  Society is cruel & ignorant. 

I think it's easy for us who are not on the spectrum to assume how our children interpret things.  Like that they won't feel shame or disappointment based on our actions.  I again ask everyone to view videos on the TAAP website.  I have learned that what I see on the outside (possibly someone staring at the floor, grunting & flapping) does not always reflect what we NT assume is going on inside (persons using alternative communication methods to make intellectual observations well beyond my abilities).  Those are images & thoughts that I remember every day, and will especially remember when my dd is older.  I never want her to see loss or disappointment in my eyes, or for her to feel she is a burden.  If we forget lessons like these, then we may easily assume in years to come, that our grown children (who may not communicate or has a low IQ etc.) do not understand what we say or do or write.  Amanda touched on something the other day about how each time an autistic person stumbles into oncoming traffic, it is sometimes a suicide (basically many of us would assume they did so because they didn't know any better).  That hit me big time.  I never want my child to feel that her mother wants to fix her because she is so terribly broken...

I'm also not saying "be complacent" & not do anything for your child.  It's not sink or swim, not at all!  We do a lot for our dd, to help her be more comfortable & are always seeking out new ways to help her (weighted blanket, social stories, sensory stuff, etc.).  I feel that therapies (at a young age especially) are great--so long as it's not forgotten that the child is first & foremost a human being and should be treated with love & respect.  To make your life all about trying new (& sometimes downright frightening) 'treatments,' often depleting your life savings, in hopes of a cure...there's just little right I can find with that. 

I'm not saying you are horrible for hoping or praying for a cure.  What I am saying, especially to parents whose children are newly diagnosed, is to ENJOY the child you do have.  Not to mourn day in & day out "all" that you don't have. 
Elle2239339.6135532407

Unless you have asd or aspergers you can only guess how life affects us

i grew up horribly

i was put to the extreme of shock treatment in the hope of a cure

of course back then aspergers was not translated yet

yes autism is hard for parents but not half has bad has it is to the child

imagine its the child putting his parents into these therapys how would we all feel then it would certanly give upeople an undrstanding of constant pressure constantly trying to be how peope tell us we should be.

What is normal anyway who defines normal you me i dont know normal is differant for everyone

dispite having it rough and dispite four of my chidren being on the spectum i still would not cure myself or my children

we are autistic and nothing in this world will ever change that

chasing rainbows is not a hobby for me

shell

 I am happy with who I am and the way I am. That doesn't mean I don't want any help (eg I'd like help with my reactions and reflexes being delayed or not working at all sometimes) or that I don't want any help for Tom (I'd like him to be able to tell us his wants and needs for example), but I do want to maintain mine and his way of thinking, our perspectives on things, our outlook on things.

 I don't claim any benfits for myself and don't claim all that we are entitled to with Tom, but for those that do claim benefits I see it as a way of providing them the help they need to live as independantly as possible and, in turn, to offer support to others.

 People on the spectrum need help with daily life skills, with communicating and sometimes coping with extreme under or over reactions to external stimuli (eg noise or touch). There needs to be a change in attitude by people not on the spectrum related to how a person on the spectrum is perceived by the way they behave, or communicate or interact with others. One example I can think of is that when I was 11 I liked to read a tourist book about my town instead of talking with the other pupils. This was seen as daft and weird and I was mocked for it. I was harming no-one, I was happy and I was learning things. A shift in attitudes would have led others to either leave me be, or ask about the book, or say nicely "do you want to join us for a bit?" if they were determined to be sociable (

I am so proud. Thanks for the post Elle!

[/QUOTE]

Indeed, I feel I have done well, and during high school have pretty much acheived NT status by hiding my autism, or whatever mild form I had left, obviously as a child it seems far worse but symptoms improve with age (mostly).

I think many of these kids have a bright future, it just looks so rough now. Heck, I never had early intervention or ABA (as I was DX'ed in the mid 80's, then when I moved to a new school district, i was again re-DX'ed for progress perposes I guess, as my parents hoped maby I could have changed).

I wish my parents had the same thought you did, to accept it. Too this day they beleived that I had 'juvinal autism' and that magicly when I entered mainstream class (5th-6th grade) I was cured. I think its great they have these theripies out their, tho its to early to tell if they really work, I received only special ed, nothing else, except maby the occasional psycologist visit, and I sorta grew outa it (almost).

I still have very mild issues, and always will, so wont every one of these kids, however, it will hardly get in the way of their lives as they enter the real world, the theripy can only help, and I feel, as good as I did in life so far (even better then NT's my age more often then not) I feel some of these kids will do better then I did, perhapse be indistinguisible from their peers, later in life.  Thoughts of the latest X-Men movie come to mind...would every person diagnosed with autism be required to be cured?  Would they want to be?  What then?  That's such a dark & unknown road


i really agree with this statement whos to say autistic adults wouldent rise up and start an insurrection? with violence

because of the feelings of people threatining their developing race?

a cure being announced would be like the second coming of christ or would be like it being proven theirs life on other planets

(both of these are being used as examples of the impact of what it would be on some of our lives

and for some of the emotions of fear and shock that some who didnt want to be cured would feel)

i think the x men 3 scenerio with magneto leading the revolt could be come a real life thing with some militant adult autistics who would consider this the final slap in the face and are scared out of their minds.


and whos to say what would happen? the neurodiversity movement is growing and they are made up of adults who are as against being cured as you can imagine i think if it ever does happen those who are agaisnt it will be more set off and angry

then most nt parents can imagine.


im not ND but

i personally do not want to be cured and never will be nor will i accept one at 21 im at peace with being an autistic and am fine with it i never would accept a cure

however i doubt that it would be required just there for those who need it

im of the high functioning aspergers group and certainly am sympathetic to the parents of low functioning kids and their desire for a cure given the severity and struggles of the affected child and belive if somone who was lower functioning were to want it thats their buisness.


but for the crowd of high functioning people it is not always needed i personally think society should spend more time learning to adapt to autism

because i dont think its going anywhere i think myself that they will find a cure for cancer before they find one for autism and that if it is coming it is still a ways off.

(just my opinion)hope i didnt offendI just thought about the same thing today . After my ds got his diagnosis
all I could think was 'what do I do to make it go away' But now I know that
it will never go all the way away and I am okay with it. My job now is to
figure out how to make sure that he feel good about who he is (same
goes for my NT girls) and if there is anything therapy-wise that he could
benefit from.
I think it is the stages of grieving from denial to bargening to acceptance.
The grief is no reflection on my son - he was perfect all along. For me the
grieving was the realization that my kids will go through struggles that
are beyond my control.I pretty much agree with most of what was said in the original post.  For sharlet however motor skills are just as delayed and goals just as difficult to reach as all other areas.  In fact her specialist just told me the other day that when she starts school they will not even attempt to get her to write.  That her motor skills are so bad there would probably be no point, so she will go straight to a laptop.  That opened my eyes a little more to how severe her motor delays are, I thought fine motor was at least a little better that gross(which I know is very bad) but apparently not. 

I know I HATE when family, neighbors and friends state “Oh! I saw a special on ABA or VBA the kids have great results and Alex won't have problems anymore. Or "I saw this great program. You should get Alex in it".  Yeah! it is 900 miles away!!!

"You should do that"

Do they know how expensive 40+ hours of ABA is?????

I do not think we will find a cure.  I do think we will find the cause.  I would like to know what powerful hazard causes such neurological problems.  Imagine if it was environmental, could we end up with ratios like 1 in 50 in 10 years?

 

 

I too am so tired of hearing about 'cures'. I have heard in the past few years 'your child can be healed if you have enough faith', ' if you would spend k each year to go to the institutes in Philadelphia, they could heal him', ' if you get aba he will be normal later', ' if you advocate for 40 hours of intensive therapy with speech primarily he will be better', 'you need a DAN doc, they really do defeat autism and it is as though the child never had it', 'move to so and so and do chelation, that will cure him' and TONS more. THEN, when you do not do these things, people think - or say - 'guess they don't really care' It is so hard, which is why I have become even more reclusive! WHY CANT PEOPLE BE SUPPORTIVE instead of foisting their cures? Did you know there are at present 1000 - yes, one thousand - 'cures' fur autism?

Like Sharlet, my little boy will never write but will keyboard. My little boy LOVES mixers and blenders and swings. He hugs and kisses spontaneously. In him there is no malice, manipulation or deceit. He is an angel. I love him with all that is within me.I wish other people did.

I think Sarah is recovered not cured..all the things that were issues that prevented her from learning are gone and she can be with nt kids and appear totally indistinguishable but I feel she will always need tweaking here and there with language...mostly now it is her literal thinking and rigidness. Socially she is still behind peers but slowly increasing her motivation:)

I would never call her cured because she is still autistic no matter what therapies we have done it is apart of her and will remain...I feel I am on spectrum as well and manage fairly well but the core of my issues are still there and remain..so be it:) I live as well if not better than many nt folks because I dont try to be them at all and just be myself:)

ShelleyR39340.294375Autumn--you really got the heart of my point. The HIGH cost involved in
chasing down these so-called cures. It is so disturbing. I like how you
put it, and I hope I didn't 'defeat' any parents...but sometimes you hear
them talking like they really, truly will somehow 'cure' their child of
autism. These companies are ripping people off, and it is horrible.
Emotionally, and financially, I can't imagine the toll it will place on these
families--if they are solely invested in a cure.

When dd was about to be evaluated, one of our therapists (who has 2
grown autistic children) said to us: "Whatever you do, don't go through
your bank account trying to completely change her or to 'cure' her." She
warned me of all the schemes that are out there--and told me they had
even tried a few early on w/ their children. She said that was the best
advice she could give, and to accept things. She's been a great resource
for me, as she has 20+ years of parenting experience, and her children
really have changed me so much. I really urge parents meet, even online
on this board, autistic adults and find their perspective on things.

Also to you & Allegra, the point I made about motor skills was for the kids
who primarily have the social & behavioral issues. A lof of children on
here don't have very many delays or problems after age 3 in gross or even
fine motor, if ever. Those social/emotional/behavioral/communication
goals overall are far more difficult to achieve than a basic PT or OT goal.
In our case, some of dd's goals with regard to motor skills can sometimes
be met after 6-8 months of therapy. The social things, issues w/
meltdowns, etc. those really are not things that can be tracked like the
motor issues, and they are also issues that the child may always have to
deal with. People so often are overjoyed that their child can "finally" do x
& x (usually both motor skills or speech even)..."but if only he/she would
have a friend", or something. So, that was my point, I don't want it to
seem like some of our kids don't ever have motor issues that can't be
helped, or not until later in life. I really do feel for you both. My dd has
hypotonia, plus her sensory issues, so we've had motor delays from early
on. She has been in PT & OT from infancy. I am really thankful that
keyboards are available for our children, as even a couple of years ago,
this would not have been an option.I know of several children like Sarah who had intensive interventions and
have graduated from ABA and do great in typical classrooms without
supports. I think there are things, probably only obvious to us, that set
them apart. [QUOTE=Rainman]   i think the x men 3 scenerio with magneto leading
the revolt could be come a real life thing with some militant adult
autistics who would consider this the final slap in the face and are scared
out of their minds.[/QUOTE]

I really like all you had to say, Rainman. People may think that's too 'out
there' but if you watch some YouTube videos with these parents and/or
docs claiming they have a cure or how wonderful life will be once they
find this supposed cure, it is rather scary. They really have a total lack of
respect for the autistic community (and/or their child if it's a parent
speaking).

And, I wanted to tell you--my dh & I just watched the movie the other
night. Halfway through it, I turned to him & said "Hmm...sounds like the
whole autism thing to me!" and we both wondered if an Aspie or Autie
wrote it. Perhaps I just have a perpetual state of autism on the
brain...and so I made the connection. Who knows? I'm sure we'll watch
another movie tonight, so we'll see. LOL!   ;)
[QUOTE=Elle22] [QUOTE=Rainman]   i think the x men 3 scenerio with magneto leading
the revolt could be come a real life thing with some militant adult
autistics who would consider this the final slap in the face and are scared
out of their minds.[/QUOTE]

I really like all you had to say, Rainman. People may think that's too 'out
there' but if you watch some YouTube videos with these parents and/or
docs claiming they have a cure or how wonderful life will be once they
find this supposed cure, it is rather scary. They really have a total lack of
respect for the autistic community (and/or their child if it's a parent
speaking).

And, I wanted to tell you--my dh & I just watched the movie the other
night. Halfway through it, I turned to him & said "Hmm...sounds like the
whole autism thing to me!" and we both wondered if an Aspie or Autie
wrote it. Perhaps I just have a perpetual state of autism on the
brain...and so I made the connection. Who knows? I'm sure we'll watch
another movie tonight, so we'll see. LOL!   ;)
[/QUOTE]


Lol maybe

thank you for your comments you can never really say never to somethings happening i ve found even if they sound too out there LOL

i havent seen the videos you speak of but quite frankly think i would be a little spooked to see them

i think in most cases these people are as out to get as much money as they can

so that might be the reason the docs try to make it sound so wonderfull to decive innocent parents and make money of off them not very honest i feel.

if some of them are parents i feel really scared for some of those kids they are not in the right hands if all their parents see them as is flawed i think.

glad you like the movie i cant say ive seen it yet ive been meaning too maybe when it comes on tv someday

Gtto thank you for your opinion as well i found it very interesting to read and enlightening as i do alot of your posts

If curing Jeremy means him forgetting all his 'facts'- that seem to make him who he is....- then I want him JUST THE WAY HE IS.

He is going to shine thru Middle School/High School in Social Studies- that will make him so happy.

And- that is what its about. 

[QUOTE=Daddy]I understand what you say, BUT  I think every parent should push for the most. There is no cure for autism but there have been many kids who became indistinguishable thanks to the many hours of therapies they received.[/QUOTE]

Indistinguishable is not 'the most' though.  It is only 'the closest to appearing non-autistic', which is hardly the most an autistic person can do.

An autistic person who is not putting energy into appearing non-autistic for its own sake (which is what most of indistinguishability is) can accomplish far more than an autistic person who is.  Because they have that energy left over for things that actually matter.

Moreover, many (in some cases most) of the autistic people I know who have become indistinguishable from non-autistic people:

1.  Are not really indistinguishable to a discerning eye.

2.  Develop serious identity problems by adulthood.

3.  All but the most energetic of them face burnout sometime in life, and with the appearance of being totally non-autistic, and then burning out, they get less support when they do burn out (which happens faster the more effort they have to put into looking 'normal') or else end up misdiagnosed with a psychiatric condition and given inappropriate 'support'.

I know a woman who ended up married because her autopilot "appear normal" circuits told her that was what she had to do.  She was in her fifties before she was able to do anything of her own volition rather than because she thought it was expected.  Fortunately her husband was very understanding.

One young man I knew was an ABA "success story", indistinguishable and all that, and asked me numerous times, while he was nearing adulthood, who he really was.  He didn't know.  He tried to then overcompensate by doing anything he thought was "autistic", but that wasn't really who he was either.  He had to my knowledge just started to really figure himself out (as something other than a caricature of 'normal' or 'autistic') when he died suddenly of an undiagnosed health condition (and it's quite possible that there were warning signs that he couldn't communicate because he'd been taught the appearance of functional communication rather than the real thing).

My friend was on a panel at an autism conference with two other autistic people.  My friend can act normal but only for short periods and not under stress, and that act had already broken down because of the conference.  She was on a panel with one guy who could never act normal and one guy who was so 'normal-acting' that he looked really fake to her.  She could identify with the guy who could never act normal, even though they looked very different, but she couldn't identify with the guy who was 'normal-acting' because all his interests were clearly given to him by others and he kept asking his mom what the responses to questions about his personal interests were (because he didn't have any that weren't given to him).

There is so much that autistic people can do if given the chance and the opportunities to learn certain things, but being indistinguishable, as if that is the most we can do, that's not only setting the bar too low but in the wrong direction entirely.  We should be able to learn what acting 'normal' means, but be able to decide for ourselves whether or not to do it, or how often to do it (or even whether it's a possibility for us at all, or a possibility long-term -- for many of us it's simply out of the question).  Too many adults I know end up totally confused, in major identity crisis, and meanwhile everyone tells them how great they're doing.  They're really living in hell but they've got their bodies well-trained to go through the motions.
gtto39340.4799074074I've got a problem with the X-Men comparisons.

Here's why.  (I'm going to quote from something I wrote elsewhere.)

[quote] Another thought, which has long bothered me about the X-Men despite liking them, is as follows. (Most of what I’m about to say is common to all X-Men stuff, so there won’t really be spoilers.)

It reinforces a particular way of thinking about people and their political beliefs, that is common but destructive. It lumps several beliefs and actions together, into basically two groups.

Group one (represented by the Brotherhood of Mutants):

Group two (represented by the X-Men):

As one reviewer put it, you’re clearly supposed to side with the “good guys,” but it’s the bad guys making all the best arguments against cure and successfully pointing out the real ways in which it will be used. The issue of siding with the “good guys” is forced by the actions of the “bad guys,” which very few people would condone.

But those two groupings of ideas up above, are not the only way ideas can be grouped. Unfortunately, I’ve actually seen people arguing what views to hold and not to hold, based on whether they sound more like views held by the Brotherhood of Mutants, or more like views held by the X-Men. People are influenced by this stuff. It provides two convenient stereotypes of styles of activism, for one.

For the record, with regards to autism, I don’t believe in a cure, I don’t believe that cure will be voluntary, I don’t believe that even what looks like “voluntarily” choosing a cure is as voluntary as its proponents would have us believe, I believe that prevention would be merely a form of eugenics, I don’t believe that some autistic people are so defective that cure is the only option (I don’t even think of people in general as defective), and my views on many things disability-related are characterized by the society I live in as extreme. At the same time, I am neither hateful nor perpetually angry, I am not a separatist, I have no sense of superiority over anyone, I don’t want to see anyone dead, and I have a strong sense of equality for all kinds of people, autistic and non-autistic.

But take the first several viewpoints, and it’s easy to view me as at least either angry, hateful, or having a certain sense of superiority, based on certain stereotypes of what it means to hold the views I hold. And those are often charges I have to answer to, by people whose vision of the world seems to bear a strong resemblance to the cartoonified simplifications that make their way into the X-Men.

I should note, also, that while I am not a separatist, separatism does not necessarily mean any of those negative things either. It can mean just entirely or primarily wanting contact with a particular kind of people, for all sorts of reasons. There are many autistic people who mainly or entirely have contact with other autistic people, where they can manage it, and there are others who want to build communities of entirely autistic people. This doesn’t seem like a problem to me, even though I wouldn’t want to live there. I don’t automatically view them as hateful or supremacist, because most of them aren’t.  Some people do view them that way, though, and that is not accurate.
Moreover, there are plenty of people who think that if they hold one of those views, then they themselves must do the other things described on there. There are people who start out with a view that we are absolutely okay as we are, and work themselves up into a state of artificial hatred or superiority that they would not have worked themselves up into to begin with had they not believed that these things were all necessarily connected. There are plenty of people with more moderate viewpoints who characterize the degree of moderation or “neutrality” in their viewpoints as the only way to promote equality or love, and there are people who are drawn to embracing more “moderate” or “neutral” viewpoints in the fear that they will not be promoting equality or love unless they do so.

In America, the extreme version of views of women’s rights a hundred years ago would be considered unbearably sexist now, even by most people who are not feminists. And many of today’s views held by many people who have plenty of sexist viewpoints, would have been considered unbearably radical back then.

Whether a viewpoint is considered extreme or not depends entirely on the society it takes place in. In a society that totally devalues a group of people, saying that this group of people is valuable as they are and does not need to be prevented or changed into a different kind of people, looks like an extreme view. But in a society that more or less accepts that group of people, it’s not an extreme view at all.

Therefore, it has always seemed to me that a view should be taken on based on whether it seems to be the right view, rather than on whether or not it is extreme in the society that it’s a part of. Taking an “extreme” or a “moderate” view for its own sake, is putting yourself totally at the whim of the society you live in, and reinforcing its own structure of how views are seen.

I talked about the movie to a neighbor of mine, and she said something like “It sounds like the good guys in the movie were what people think of as the good guys in real life. But in real life there’s a third group of people, and that’s us, even though people really don’t hear about us.”

So, while I enjoy watching the X-Men, I really hope that it doesn’t reinforce too many of people’s rather polarized views of what certain beliefs mean about a person’s other beliefs. There are third, and fourth, and fifth, etc, categories, we’re not all X-Men or the Brotherhood of Mutants out here in the real world.[/quote]


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