Autistic advocates / self-advocates question

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A cognitive impairment could be just about anything that impairs thought processes. Autism is more than just "cognitive impairment." It affects many different parts of the brain, and has many effects on the person. People can have "autistic" personality traits, so I do believe that autism affects personality. Taking away certain impairments may not have much of an effect, but "curing" autism would change the entire person.

Examples:

Extreme attention to detail
Obsessive interests
Ability to focus for very long periods of time
Intellectual vs social interests
The tendency to think for oneself
Tendency towards honesty
Exceptional memory
Youthful outlook
Logical vs emotional thinking
Etc...

These things vary between autistic people, but there are many differences between the way that autistic people think vs neurotypical people. I haven't ever talked to anyone who wasn't autistic (besides some family with autistic traits) who thought the way that I do.



Trying to help a person overcome intellectual or language impairments is not that same thing as "curing" autism. A cure for autism would have to change more than that. I think that's what people are against.

I think that the hostile way in which you are communicating here is "laughable at best and pitiable at worst." People feel attacked because of the manner in which you're trying to prove your point.

If you are careful to include a tag line that asserts that you have neither language or intellectual impairments, then why would you be against remediating these in those that do ? Does not having these impairments make you less autistic ? It is hypocritical to take a stance against interventions that would remediate these when you want the world to know that you do not have these. Pointing this things out does not make my posts hostile towards you. Also, if you don't want your views questioned, then you should not make hostile posts yourself.

Never said I was against "remediating" those impairments. Being against a "cure" for autism, and being against fixing language impairments or intellectual disabilities are not the same thing. People don't have to have either language or intellectual impairments to have autism.

"Pointing things out" is not what makes your posts hostile. It is the general tone of the posts, in addition to the nasty remarks.

You're not questioning my views, because those aren't my views. Perhaps you should read more carefully next time.

I don't want the world to know that I don't have intellectual or language impairments. The "tag line" is my diagnosis. It's used for clarity, because that is exactly what my diagnosis is. If you did more research about autism, you would find that being "exact" and including details is important for many of us.

What nasty remarks did I make and how do you presume tone ? Your first post in this thread accused me of attacking all HFAs even though I made it clear I was questioning a subset of the HFA population, namely ASAN. That was a hostile post and the tone of your messages has been progressively harsher.

Secondly, are you sure of my neurology ??

In any case, I think it better to not continue this conversation in this way. I propose a cease fire if you are up for it. I am glad you are not opposed to remediating specific impairments. Thank you for clarifying that.

How do you know that they all do?

You see, this is where it's silly. People are not saying that 'no autistic wants to be cured', they're saying that you can't know for sure if that person can't tell you, and it's therefore a bad thing to want to completely change who someone is to better suit you. Some people want a cure, some don't, but the fact is that you're in a better position if you don't change someone that can't speak for themselves about the issue, rather than forcing change upon people who might, if they could, then spend the rest of their life knowing that a loved one changed them and they're not 'them' any more.



And here's where it is again. The words 'put up with'. You want to change someone because the way they are is an inconvenience to you.

I know that's not how you see it, but this is why people are against it. Autism makes you struggle financially and physically, so you'd happily have a different child that was better for your bank balance.



This is the point, though. If a lawyer can't stand up for themselves enough to go back to being a cleaner, it's the same as an autistic person - they get cured, they can't go back to who they were. But we're talking about a permanent change - altering someone's mind irreversibly so that they can't go back. They can't, with their improved intellectual capacity, say "I wish you hadn't done that to me" and just 'reverse' the cure. Perhaps they can then tell you that they hate that you changed them to fit your agenda, but it's too late to just go back at that point. This is where the problem lies. If a cure was entirely reversible and didn't affect someone emotionally either, from knowing that a loved one wanted them to be a different person, then I don't think anyone would oppose it. If it was a 'try it and see' scenario, great. But then, would people want to go back once they'd experienced the alternative? Is that the same as not wanting it in the first place? There are just too many questions and confusing factors to make this a clear cut decision, but ultimately one way might involve changing people against their wishes (and showing them that you weren't happy with who they were) and one does not.

So LFAs and MFAs must continue having language or intellectual impairments because these autistics most likely want to have no ability to communicate, want to continue hurting themselves via SIBs, want to continue being unable to live independent, autonomous lives and will resent being given the abilities to communicate, stop hurting themselves & their families, and live as autonomous, self-determing individuals ? Is that what you are saying ?

I very much agree. I feel very concerned to protect those people who can't speak for themselves. Personally I think that a good way to approach this is to work with people who have autism but can communicate and find what works in terms of overcoming some of the challenges which autsim presents. From this we could get data about what generally works well and is perceived as a positive change to the person experiencing it. Once we have a body of data which can tell us how certain changes help and how acceptable they are for autistic people then we might consider using this understanding to help people who cannot express their wishes. I would still want to see safeguards for this though since these people are not able to effectively refuse if they don't want it. The safeguards could be something like:

(1) A large body of verifiable evidence suggesting that such and such a change is universally positively (or almost universally positively) recieved by the individuals who have it done.

(2) Family and medical professionals who know the person really well believe that the person would benefit from it.

(3) The person is closely monitored for signs of distress during the process and the process is stopped if it is perceived that the person recieving it is reacting negatively.


I can see why people say 'no cure'. I really get it. As I said before I would not want to be cured because the autism is part of who I am and I fear losing my self, but I would want to alleviate those aspects of autism which cause me most problems. However, in the face of repeated SIB and other problems which severely negatively impact the quality of life for an autistic person, to me it seems clear that we need to try to help someone in that situation. I just don't think that help is best for the person if it is a complete re-write of the person's personality (which is how I see a cure). I think targetted help which helps the person and their family alleviate the SIB, for instance, is better.


(Just as an aside, whoat helps me deal with lots of the negative stuff most effectively is living with a dog. I know it sounds a bit strange but it helps me enormously. It's almost like dogs speak my native language (which has no words) and that realy helps.)





I agree. I feel the same.



Yup - I think you've explained exactly how I feel about a cure.

I'm saying where do you draw the line with your 'cure'? How much of the person do you change before you're happy with them? Are you really happy with the idea of medically rewiring a loved one's brain?

I also wanted to say that this reflects how I feel. I absolutely support additional resources to help individuals overcome problems which disable them, if that's what they choose.

To the OP:

Let's be honest about what a cure would entail. Since autism isn't a single entity and (at least according to current thinking) results from a high number of de novo genetic changes, a cure would have to involve changing a lot of a person's genetic code. Now that technology does not exist and will not exist for a long time, so the resources involved in finding that cure could be better spent helping to improve the lives of those who currently have ASD. But the more worrying aspect is that a "cure" will probably involve identifying genetic markers likely to lead to autism and stop the person being born at all. I could be wrong, but I think that is what worries so many autistic people.

You also need to think about those who were "written off" as low functioning children that would never be able to care for themselves who go on to have successful lives when they are able to adapt to the world and the world adapts to them. Would it be better that they never existed because their lives were difficult as children? I had a lot of problems when I was younger and the problems caused by ASD have made my life unbearable at times. I still have a myriad of social and sensory issues which cause me problems, but I also have a very successful career that few people could do precisely because my mind doesn't work like others'. So while I might have wished to be "cured" when I was younger, now that I understand myself and others understand me better, I see much more value in helping and supporting individuals than I do in curing them. But I don't think anyone here is arguing against a "cure" at all, only that no one should be given such a cure without their explicit consent, and that there are much better ways to help autistic people than "curing" them.

My son is autistic; can't speak (he could till about 2.5) has intellectual disability, learning disabilities, and now occasional seizures too. That sounds quite negative but the reason I'm saying these things is simply to outline his challenges (He's a great kid).

I tend to think of autism as fundamentally a neurological difference from the norm that has a defining set of characteristics. The reason I think that is because you cannot have a so called spectrum that ranges people like Darryl Hannah or Arie Neeman through to people like my son without having some defining aspect that is held in common. Certainly Darryl Hannah and Arie Neeman can talk, and do not seem to have pervasive cognitive and learning problems, or at least not to the degree my son has.

And I am confused by the idea some have that autism is a disability (do ASAN really say that? ). An autistic person may have disabilities due to their autism, they may have other disabilities as well, but neither of these things are necessarily so. You can have autism and no disability I am sure and there are autistic people who say so.

I would have no trouble wishing my sons disabilities gone - but his autism can stay. I love him the way he is. I don't have a burning desire for him to take up sports or have friends or such things.
But I would like for him the basics many people take for granted. My son is unable in the most basic way yet to express where something hurts. Thats a big deal. His teeth were giving him hell for a month and he could not express that in a way that could be understood. He has seizures sometimes. Thats a big deal too. Its taken us six years of busting a gut to get him toilet trained (almost there). Im sure he disliked it as much as we did. That was quite a big deal for our family moreso than him.

I don't feel that wanting assistance or even an unlikely fix for these issues is the same as wanting a cure for autism. Different things in my eyes.

See, this ^ I can't decide if you're being deliberately obtuse for the sake of an argument or if you really don't understand that much about autism. Do you really think that the only way to reduce the incidence of SIBs is to completely rewire someone's brain so that they no longer have autism? Or that an autistic person cannot desire to live independently while also still being autistic? A person can still want to be themselves while improving aspects of their lives which disable them. If you really want to have a conversation about improving the lives of autistic people (which I'm not sure you do) I would suggest finding out more about the etiology of autism because you're coming across as rather ignorant.

Your statements contain such hyperbole ! ! "Rewiring an entire brain" -- are you sure that remediating specific impairments wouls call for "tewiring an entire brain" ? And quite frankly, if such rewiring removed the significantly negative aspects of autism - such as aggression, SIBs and a total inability to communicate, then why not ? What do you have against removing these inclinations (especially if you dont personally experience them) ?


BTW, aside from ASAN's claims that "curing autism will change one's "personality"", is there actual research to show that this is indeed the case ?? Or is this assertion just a classical strawman intended to blame and shame those that do want a cure ? None of the list of character traits mentioned in one of the posts above are cornered by autistics, including obsessions with special interests.

i think you miss understood them lady they were insulting you your child is perfectly fine your the one that is defective

never assert that you know what someone else wants because then its not what they want its what you want



and on the note of how do these "HFAs"(functioning level is an obsolete term as has already been covered) know that no autistic wants to be cured... simple we all know that yes there are autistics that want cured the thing is your putting words in our mouths. though it is worth noting that most autistics that seek a cure do it because they believe it will automatically make their lives better and make them happier when thats not the case. in reality for the people that you are refering to as low functioning what makes them low functioning(according to your definition {the correct definition is iq less than 70}) is not their autism it is the conditions that they have alongside autism.

i feel sorry for your child for having a mother like you. try talking to your child and asking them what they think instead of saying what you think in their place. and befor you say they cant speak have you tried actually listening like a good parent (hint try different kinds of AACs)

and lastly ASAN gives alot more to helping autistics and their families than other organizations do especially pro-cure organizations do that are busy searching for a prenatal test for autism

and please start using the levels at very least cause low and high functioning are extremely out dated and moderatly functioning (assuming thats what you meant by MFA) was never a thing it was low if your iq was below 70 and high if your iq was 70+

Last edited by donaar on 14 Apr 2016, 11:19 am, edited 1 time in total.

I didn't include the word 'entire'. You've added that yourself.

I think I'm concluding from this that what you're looking for is not a cure for autism after all, otherwise you would understand how a personality would change, I think. There are a long list of traits that come under autism. Of course, if you remove or change that many traits you're going to be left with a different person. Heck, changing even one or two can make a huge difference.

they are just putting words in your mouth its a common thing for NTs that are pro cure to do to autistics

Well, good for you for overcoming your challenges as a child but you do realize that there are many LFAs and MFAs who will never be able to live independent lives or even communicate due to the severity of needs ?? What do you propose to do for these people ??

Another strawman is that a cure would prevent autistic people from being born ! !! Prenatal tests for Down's syndrome has not prevented children with Down's from being born, so that is not even a valid reasoning. Parents and families have the right to know if their unborn child may be autistic. IMO, the worst abuses against autistics are perpetrated by those who do not have the ability to care for them. Some people are not fit to be parents. So by opposing prenatal tests for autism, you are doing some autistics a bad turn by allowing them to be born into families that will be so overwhelmed by the care needed that they will turn on the very souls that they are supposed to love and protect and cherish. I am positive that is not at all your intention ?

I am also addressing your accusations about me not wanting to improve the quality of autistic people's lives. Show me proof (not ASAN's propoganda about how autism is such a special snowflake) that "curing it" or remediating SIBs or SLI would entail "rewiring a brain" and changing an entire personality ?? And even if this waa the case, so what ? Would you rather that people continued to hurt themselves and be unable to live independent lives, in preference to not having their "personalities" changed ? Why is your personality more important than your ability to live a life devoid of aggression or communication or language impairments ?

The final strawman is attempting to prevent a cure in those who are far more severely impacted than you are and lacking even basic communication skills by insisting that they should make their own decisions (knowing perfectly well that they probably can't speak for themselves) ! ! This does NOT sound like something that anyone who actually wants to improve the quality of life of MFAs and LFAs would assert.

My point is this. Many MFAs and LFAs will never lead independent and autonomous lives due to the severity of their autism. Many - esp those living in countries without a strong social / government system in place - will be bankrupt, homeless and abandoned after their parents' lifetimes. Still others may undergo horrific abuses in overcrowded and understaffed "facilities" but may never be able to speak of their suffering or escape these places to live independent lives. For these people, everything that can be done to help them reach their potential must be done, even if it means rewiring their brains. Denying them a cure because a subset of those with mild autism living in benefits- rich countries complain that their personalities will change or that autistic children will be aborted is a travesty. No one wants to be abused, no one. Therefore, it is my opinion that LFAs and MFAs would want to reach their full potential and live fulfilling lives. If a cure is the only answer, then cure them. You can always personally refuse a cure ans personally produce all the autistic babies you want. No one will stop you, so please don't prevent those less able than you from accessing a better life for themselves. Or, how about you adopt a few MFAs and LFAs yourself and care for them for the rest of your lives ? Put your money where your mouth is, and all that jazz.

Last edited by MoreThanThat on 14 Apr 2016, 11:34 am, edited 1 time in total.