Autistic advocates / self-advocates question

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Actually, I completely agree with this second paragraph, even though you stated it was in sarcasm. Their stance against a cure that would improve the quality of life for MFAs and LFAs is very ableist, indeed. For one, at least a few of them attribute the difficulties faced by MFAs and LFAs to "intellectual disabilities" aka MR, and not to "autism" itself (I have seen a couple of posts to this effect on this website). They *are* acting like supremacists who not only blame the challenges faced by their less able peers to "comorbids" but then turn around and further decry their less able peers' access to interventions / treatments that might make their lives (and the lives of their caregivers) a lot more functional and lot more easier. This is a very confusing stand because if a "co-morbid" condition was responsible for their peers' severe disability, then why should that "co-morbid" (which they allege has nothing to do with autism) not be cured ?

As for "decrying" filicide - this is a very controversial issue. I cannot fathom someone - anyone - wanting to murder a loved one, but then where is ASAN when the families are - quite literally - crying out for help ? If they don't have to help families in crisis, then they have no right to "decry" anything.

ASAN does not speak for my moderate child and I resent that they would try.

This sounds like it could help children with various functioning levels.
ASAN Files ADA Complaint on Communication Access in Schools
And ASAN describes autism firmly as a disability.

As for co-morbid I have a problems with how word is used as related to autism and recently started a thread about it.
The Co-Morbid Concept Is Dicey

Because that 'change' alters a human being. This isn't removing a tumor from someone's face. This is taking an actual human - who they are - and adjusting it because they're currently something of an inconvenience to you. Because, according to your standards, they must be 'suffering' by being themselves.

Autism isn't all roses and rainbows, but here's the thing - I would rather be me, and take what comes with being me, than become a different person. A cure would change a personality. I think it's a massive shame if people can talk on behalf of others and decide that they want to change them, potentially against their wishes (we don't know either way).

It's not about 'the right to refuse the treatment for themselves'. Great, I can refuse any cure for myself, but I care about others as well. It's very selfish to say 'I'm fine. I'll refuse the cure. Let it happen and then someone else can have a relative that decides to change them'. Surely, we should be standing up for others that might not want to be changed as well? That might receive a cure and hate it, because it means that they're no longer the same person and that whoever decided it was the right choice for them was basically making things more convenient by their standards. "It was hard to communicate you and a struggle to deal with your toileting habits, so we've 'modified' you to make you a bit 'easier'."

I know that when people can't speak for themselves they do need someone to advocate for them. But you have to understand that advocates will take different stances - nobody is expressing that person's voice unless they simply can't speak 'loudly' enough and you've taken their message and you're saying it for them. If you don't have a message to pass on, you're just pushing your own view on the matter, and we're all only guessing.

An example, OP:

You are working as a cleaner. You're happy as a cleaner, but you can't tell people that. If someone asked if you'd prefer to be you, as a cleaner, or someone else in a different career, you couldn't express that you're happy as you - a cleaner.

A family member comes along. They change your brain. Suddenly, you're a lawyer. Because they see lawyers as more successful than cleaners. You're not you any more - when you were a cleaner you were happy as you were and had time to enjoy being yourself. Now, as a lawyer, you work long hours and you're 'just' a lawyer. You don't feel like you any more, because you seem to be constantly working in your career as a lawyer.

Meanwhile, that family member is wandering around telling everyone how pleased they are that you're now a lawyer, because you 'fit' and you're 'successful' and your bigger salary means that your family have it a bit easier. Who cares that you were happy as a cleaner before people jumped in and changed you? Now you're a lawyer, and isn't that what society prefers?

So this is to the op

Since you are obviously the Nerotypical parent of an autistic child I'll ask you this in response to why we should be against a cure

If you were offered to exchange your son/daughter for a child that was Nerotypical instead knowing you would never see your kid again would you.

Because to cure someone with autism would involve completely restructuring their brain and it would result in them not being the same person anymore

So would you trade your child for a NT one


PS you seem rather hungup on the whole incontinence thing so I assume your child is probly between 4 and 6 and your having difficulty training them just give them time it will come. Though I could be way off here on age and exact situation but if your child is incontinent it is more likely than not completely unrelated to them being autistic plus it really isn't a big deal it never really hindered me and I see no reason it should them

I see a cure as something I sometimes wish for and often fear. I struggle with a lot of things because I am autistic - huge areas of my life are just really hard and I would like all of that to be easier. The difficulty is that it is the pattern of my neurology which makes things difficult and that same pattern also makes me me. I feel frightened of the idea of a cure because it feels to me like it might kill me and replace me with someone with different neurology still wearing my body. It might look good from the outside and it might be OK for the new person but I would be gone. It reminds me quite forcefully of the droids in Star Wars who get their memory wiped. (I am aware that a cure wouldn't necessarily interfere with memory although it could, but if I start to think and respond in completely different ways am I still me anymore? )

And another word to the op if your post has to start with "I do not intend to offend anyone" you may want to rethink your post if you really didn't want to offend anyone

Reading this thread, I feel like it is an attack against those who are high-functioning who either don't want to be cured, or who think a cure is not the right thing for autistic people in general. It doesn't really feel like an "I want to start a discussion" type of thread at all.

I really don't think there is a problem wanting to help lower-functioning people gain skills and learn to communicate. I think it depends on the individual, and the methods that are used. As a higher-functioning person, I'm working on trying to gain skills that I need to accomplish what I want from life. I don't see it as looking for a "cure", because it won't cure me. It's going to help me find ways to adapt so that I can accomplish things, but the way that I accomplish many things is still different from the way that neurotypicals do things.

A cure, in my opinion, is going to involve completely changing a person's brain and personality. I know that many of the personality traits that I thought of as being unique to me (I'd never met anyone outside my family who thought like me) are not really that unique. In fact, they are pretty common among the other autistic people that I've talked to on WP. That leads me to believe that my personality is affected by autism, or that autism is just a part of who I am.

Who would I be if I were cured? Would I be anything like myself, as I am now? Or would I be an entirely new person? I like some aspects of my personality, and I don't want the good parts to go away so that I can be "cured." If it only affected the things that I dislike, such as sensory issues, then I could deal with that. But I suspect that it would change many things.


This debate reminds me of this short story that I had read as a teenager, which I'm sure many people have heard of or read before: https://en.wikipedia.org/wiki/Flowers_for_Algernon

Yes it is blatantly obvious that they were meaning to attack rather than discussion being they felt the need to say that they were not meaning to offend anyone, huge red flag in my books

Carly Fleischman is sort of a self advocate for more severe autistics.parents also serve that purpose in a way.but more Carly's will come at some point

I've been thinking about the lady who posted the OP on this thread. I can see why folks have understood her posts as an attack. I also still stand by what I said about wanting a cure and being frightening of a cure in case it gets rid of me as much as it cures me.
However it occurs to me that perhaps this lady is having a difficult time dealing with the struggles which having a child with moderate autism can bring. I can see how, if your life is really difficult because of a condition your child has, you would understandibly long for a cure. I can also see how, in those circumstances, when other folk with autism say they don't want a cure (which I think it totally valid too from my perspective) that could make such a person feel upset and even angry.

I think what might help is if we were one day able to 'cure' or alleviate the effects of the more negative aspects of autism without getting rid of the person. I doubt that you could just globally 'cure' autism because it is a developmental difference in the wiring of the brain and so who the person is, is all wrapped up in the different wiring. But that doesn't mean that we couldn't target the things which people on the Spectrum find difficult and find ways the alleviate those things.

For me that might mean reducing my sound and touch sensitivity which makes my life intensely hard at times. I would also love to have a head up display light in my visual field which glowed green when I'm socially 'on track, went yellow when I did or said something awkward and went red when I made a social error. It would give me a 'social barmometer' which would help me manage my behaviour and connect better with people without melting down which wrecks jobs and friendships.

I wonder if people like me with autism, but able to speak about it, might have a role to play in guiding those wanting to help all autistic people, including non-verbal, non-communicative folk with more severe autism. My feeling is that no-one would want to lose themselves, to be reprogrammed to the extent that they are not them anymore. This is what I fear in a cure and I would want to protect myself and others who cannot speak for themselves against this. However, I have enough difficulties in my life that I also would like to fix certain parts of my autism which cause me tremendous problems. I would like to cure or alleviate all aspects of my autism which hurt me and those around me but I wouldn't want to lose myself in the process. I would prefer it to be a targetted effort at one problem at a time so my personality could adjust to each change. I would also like to choose how I changed so that it is not done to me but with me. That way, 'me' would come along with the process, not be 'killed' or overridden by it. Obviously for people who can't comunicate their needs it would be difficult to guess what they would want. Perhaps just trying what those who love the person think bothers them the most and then watching their response to the work closely to see if they respond positively or negatively might help?

I am replying to the OP, as I am lazy and have not managed to read the replies yet.

the fact of the matter is that there are nonverbal autistics that communicate through blogs and means on their own, without the assistance of a facilitator. Just because someone is nonverbal, does not mean that they don't have their own way of communicating. And no matter where we are on the spectrum, our brains do think the same as other autistics, or at least work in similar ways, which is not something that neurotypicals can claim. But there are non-verbals that are very much against cures. And really, I don't really care at this moment if your relative/friend is nonverbal or not, but can you please try and listen to yourself with a clear head. think about the things they hear you say, but can't adequately react to.

"I would cure you if I could" = You are not enough the way you are. Something of you is missing. You are defective as you are.

This is really damaging talk! The only person that should be able to say they want a cure.... is the person affected. And, ideally, no one would have previously talked about how incomplete they are as is. Because, really, if that was said about you, wouldn't you want to fix it too? No, it should be something the individual comes up with on their own. Same for treatments. As an autistic adult, I have found that things that stimulate the production/release of oxytocin, to be useful in alleviating meltdowns and sensory issues. I would love to be able to participate in a study for the effects of synthetic/applied oxytocin on functioning. However, that is my right (I wish) as an autistic adult. It is not, in my opinion, ok for a parent to push that on a child, and many autistics are opposed to oxytocin as a treatment because of this misuse.

For me, I self-advocate for acceptance all across the spectrum. Some would say that it is not self-advocacy, as I am not restricting it to just me. But that to me is silly. What I say to effect me, does effect the community, even if only a little, and what is said about the larger community effects me. It's self-advocacy, because I am a part of that community. But, other than promoting acceptance, on an individual basis, I don't know what your friend/relative needs, so I can't advocate for that.

Does that make sense?

The "battle" between those that want a cure and those that just want acceptance is unnecessary in my opinion. I think that if some people want a cure, then that's fine. If some people don't, that's fine, too. Each person should be able to make his/her own choice.

What I'm worried about is autistic people being used as guinea pigs in a search for a cure. Lower-functioning people and children will probably be the ones that have the least control over this. New medications and other types of treatments that may have harmful effects are what concern me. I remember how I was put on psychiatric medication as a child, and it ultimately turned out to be harmful. I believe that it negatively affected my life. But I was a kid and didn't know any better. Neither did my parents, either, as it was a newer drug.

Before we start using medications and other treatments to "cure" people, we'd better know what effects they are going to have, particularly in the long-term. If by changing the brain of an autistic person, we change everything that makes that person who he/she is, then I'm not sure that it's a good idea. We ought to at least know that that will be the result.

I think this is where we fall into knowing how autism is so intertwined with who a person is, that the two can't be separated.

I have messed up socially in a vast majority of the conversations I've had in my life. Yes, that's upsetting and it's destroyed more relationships and experiences than I care to count.

But, in a way I feel like it's almost protected me.

There was a time in my life when I desperately wanted to be able to chat to people at school, to hang out with them, to make friends. And I failed.

Now, when I look back, my thoughts are "Thank goodness I didn't find it easier to fit in. They're still living like teenagers. They're so shallow, obsessed with their looks, drinking, taking drugs, working dead-end jobs and doing nothing with their lives, I can't believe that they're genuinely happy with their lives".

Despite everything I've struggled with, I do have a life that I'm genuinely happy with. It's perfect for me; it's my dream life. It's got difficulties but they pale in comparison to everything I am and everything I have. And perhaps that's because I'm a social train crash. Perhaps, if I'd have had that 'social barometer' that you mentioned, whilst conversations would be easier and I'd be a lot less embarrassed day-to-day, I would actually have become friends with those people at school, would be like them...I might even LIKE being like that, when here in 'real life' I'm eternally grateful that I'm not like it.

One slight change can completely change life outlooks, personalities, entire lives.



This is the message I get from it.

"I would change you, because right now you don't fit in to what I've been told is normal".

In fact, interestingly, I was watching The A-Word (autism-themed BBC drama) last night and a similar message came up. The little boy had been ill and was behaving more 'neurotypically' - holding a conversation, discussing feelings - then he recovered from his fever and became his usual self once again. I've been watching each episode and hating the Mum character all the way through, but more than ever last night. Boy's back to normal, Mum starts pushing photo albums at him and trying to reconnect the way she did the day before "Come on! You're in there. I know this. I've seen you. I know you're in there somewhere, behind all of this". He's not in there behind 'all this'. He is all this. There isn't a separate person hidden behind this behaviour, that you're trying to get to. This is the person, these are their behaviours.

Those who feel attacked by my question as to why some HFA folks are anti cure is an attack on all HFAs are entitled to their defensiveness but the question remains - how do these HFAs know that no autistic wants to be cured ?

Secondly, as someone in this thread wisely pointed out, who is ASAN to tell someone else who life has been turned upside down by either having severe autism themselves or having a child or a loved one with severe autism to suck it up and deal with it ? How is it ASAN's place to even tell someone else what they should and should not put up with ? Especially since they do nothing to actually physically or financially help families dealing with moderate to severe autism, but spread false propaganda about how autism is all peach and roses, and condemn those who attempt to point sttention to the fact that autism is a spectrum and not everyone is ASAN-esque ?

Having the skills but choosing not to display them is very different from not having the skills at all in the first place. If you have neither intellectual nor language impairments, then good for you. But on what basis are you attempting to prevent interventions that might remediate these deficits in those that do have them ? That stance is a vicious attack on those who do have those impairments and whose families try to help them gain skills to remediate such impairments.

Arielsong, the comparison of a cleaner being morphed into a lawyer is a complete unacceptable comparison. It is because no one will force a lawyer to not opt to go back to work as a cleaner (if that is what s/he wants). If a person is towing "society's or family's" line and forcing themselves to continue being a lawyer, then that is due to a personal inability to stand up for themselves and their choice, and has NOTHING to do with autism. Again, once an LFA / MFA gains skills, it is up to them whether they want to use them or not. As for changing "personality", how is it "personality" as opposed to a cognitive impairment ? Is having cognitive impairments part of one's "personality" or a character trait ?

Again, if you are careful to add a tag line to your profile that says that you have neither intellectual nor language impairments, then it tells me that you ARE aware that some autistics have both. Therefore, asserting that attempting to remediate the impairments in those autistics who do have them is equivalent to changing a whole personality - especially with said tag line ! ! - is hypocritical and laughable at best and pitiable at worst.

No, my moderately autistic child is neither "defective" nor "not enough". They are a joy to be around but I can assert that they would want me to remediate their intellectual or language impairments. I say this because they seem happier and better adjusted as they learn to communicate more and more. My child laughs more often and has less tantrums or SIBs as their communication skills improve. Of course, they are still very delayed and have a significant language impairment but there is no way on God's earth that they are "defective". I also think their real personality will show up once their impairments are remediated. IMO, having an ID or SLI is not autism at all or EVERYONE with autism will have them. KWIM ??