Autistic advocates / self-advocates question

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Hello,

I do not intend to offend anyone by this thread. However, I am unable to understand what it is that autistic self-advocates do to help families whose loved one has moderate to severe autism ? For whom autism is a debilitating disability rather than just a "different and quirky way of being" ?

I have seen various posts here about how autism should not be "cured". Are people who make these claims non-verbal, incontinent, unaware of the world around them, and pretty much prisoners of their own bodily and neurological deficits ? If not, then why do they seek to speak for all autistics ? Many people who would benefit most from a cure are those who cannot speak for themselves and their own wishes. I do not believe in those who use facilitated communication to state that they do not want to be "cured" as facilitated communication is still a questionable and non-evidence based approach to communication. It may well be the facilitators putting words in the mouths of those who cannot speak or otherwise express themselves.

Again, I intend no offense, but are people like Ari Ne'eman, etc, really considering the needs and the quality of life of those on the more severe end of the spectrum while they take the podium and rant their anti-cure ideologies ? If ASAN is so anti-cure, then what else are they doing to help families affected by moderate to severe autism ?

Self-advocacy, by definition, is the act of advocating for one's self, not for others.

You may as well ask what it is that a man who puts himself through school does to help families that cannot afford tuition.

The answer to both questions would be "nothing". The reason for that answer is "because he doesn't have to".

I don't know. Why don't you ask them?

Do they? Or is this just a "strawman" question? The only people I know of who wrongly claim to speak for all autistics is Autism Speaks. They most certainly do not speak for me.

Again, do they? Can you cite examples?

What are YOU doing to help families affected by moderate to severe autism?

For that matter, what are YOU doing to get Autism Speaks to spend more than 5% of the money it collects on directly helping families affected by moderate to severe autism, with things like food, medicine, clothing, and housing?

To "cure" a person with autism is to change that person into a "neurotypical", and we all know what kinds of bustards they can be.

So all neurotypicals are "bustards" ? And the fact that you dissed my post to attack me tells me that you can at least communicate, although it's hard for me to say if you are incontinent or not.

Ari Ne'eman has drawn flak for being rabidly anti-cure. What sort of "proof" do you need when his own rants are available via a simple Google search for you verify his anti-cure stance ?

I do not support Autism Speaks. What I do to help other families with moderate / severe autism is to do and share my research on where and how to find help. I have neither the finances nor the resources to support another family financially or physically since I care for a child with moderate autism full time myself. But what I don't do is to guilt, blame and shame parents as "hating their child" because they hate their child's autism, and make sweeping and blatantly false generalizations about how autism is just "a different wiring", while willfully ignoring the needs and challenges faced by those who - unlike you - cannot communicate, and have no way of making even their basic needs and wants known.

ASAN does not have to "help" other families. But then they have NO right to thrust their agenda and "autism pride" on families who are actually living moderate to severe autism about how a "cure" is unacceptable. To me, the real "bustards" are those who minimize other people's struggles and spread false propoganda about what autism is and isn't. And yes, Ari Ne'eman and ASAN DO project themselves as if speaking for all autistics, including the voiceless ones, because I have YET to see a SINGLE statement from these folks that they are only speaking of those with HFA (or Aspergers' as it used to be known in the past). There is nothing to indicate that they are not speaking for MFAs / LFAs.

So, yeah, it is a lie to claim that moderate / severe autism is a "quirky different way of being" when there are families whose kids pee on themselves, cannot say a word, and smear their walls with feces on a daily basis. So it's irony that you would label NTs "bustards" while willfully ignoring the REAL "bustards" in this situation.

Last edited by MoreThanThat on 09 Apr 2016, 2:51 pm, edited 1 time in total.

Even "low-functioning" autistic people have hidden gifts; the problem is that people ignore those gifts and focus on the negative. Function is measured solely by IQ, which, in my opinion, is not really a great way to measure intelligence. To me, intelligence is not something that can be measured like distance or time and slapped with a number. It's far too complex, and there are multiple types of intelligence. If someone is autistic and incontinent, then the incontinence has nothing to do with the autism. Also, an autistic person may seem unaware of the world around them, but the fact is that the autistic brain is in constant overdrive. There are so many things going on around them (bright lights, noises, textile input, sounds, etc.) that they simply shut down.

Do you even know what "incontinent" is?

Your links to them - the burden of proof is on you.

All very nice, I'm sure. But what's your point?

Oh, I am not at all ignoring any large and highly terrestrial birds mainly associated with dry open country and steppes in the Old World that make up the family Otididae.

What is YOUR point ? And why are you so defensive ? You asked ME what I did to help other families with moderate / severe autism and I responded. I do a lot more than ASAN does for other families, hands down.

As for "proof", well... eh, why would you ask for proof that ASAN is anti-cure right after you just referred to "cure" as the change of the autistic brain into an NT brain, and alleging that NTs are b@stards ? Not only are your statements obnoxious but you seem really confused. If you are not incontinent, do not smear feces on walls, bang / hit your head so hard that you have to wear a helmet during all waking hours, are aware of your surroundings and have even an iota of safety consciousness, (and obviously you can communicate), or have a loved one who is similarly disabled, then how is it your place to denounce a "cure" ? Especially when you admit that a "cure" would do NOTHING for you but take away your alleged "quirkiness" and make you a b@stard NT ? How is it ASAN's place to denounce a cure when they don't lift a finger to help families in need, because allegedly, they "don't have to" ? If they don't have to help families in need then they have NO right speaking for us. Simple as all that.

Last edited by MoreThanThat on 09 Apr 2016, 3:28 pm, edited 2 times in total.

You ask some valid questions, MoreThanThat.

In my opinion, a self-advocate is any stakeholder affected by autism who doesn't get paid to be a stakeholder (such as clinicians, diagnosticians, researchers, insurance businesses and governments). That would include autists, their family members, church leaders and community groups ... but, especially autists themselves. So, in this case, autists for whom autism is a debilitating disability are no different than those who it isn't a debilitating disability. Now, others might disagree, but I believe this is true. I see no difference in the abilities of various advocates, except to the extent that those for whom autism is a debilitating disability might actually be more effective in their efforts.

That is exactly my point. Those whose autism is debilitating may not be able to advocate strongly for themselves due to their inability to communicate. Logically speaking, the best people who could advocate for more severely afflicted individuals are those not-so-severely afflicted aka the "HFAs". But so far I have been consistently disillusioned by ASAN's rabid anti-cure stance, and claims that autism is "merely a different neurology". Where is their compassion for their more severely afflicted peers who cannot say a word or who have such horrific self-injurious or aggressive behaviors that their loves ones fear for their safety and the safety of their families every single day ? How does ASAN know that these more severely autistic peers would NOT want to learn to talk, would NOT want to hurt themselves, would NOT want to be a part of the world we all live in ? And if they know this because they have a crystal ball idling in their office, then how about they do something and take in these more severely autistic into their own homes and care for them ? Put their money where their mouths are ?

If they believe that families should be self-sacrificing and viewing their non-communicative, aggressive, self-injurious loved ones as "just being a quirky one", then they should take on some of that responsibility themselves. I have NEVER supported Autism Speaks, but I actually despise ASAN just as much. Neither entity seems to care about those for whom autism is more than just "a different way of being".


Autism Speaks and ASAN do not speak for my child with moderate autism. Ari Ne'eman should get that into his head and stop his anti-cure false propaganda when he probably does not have a blooming clue about what the people in the middle and the lower end of the spectrum go through on a day-to-day basis.

Is it safe to assume that the OP is neurotypical?

There is one young man on WrongPlanet.net who, while having Level 2 (moderate) autism, is nonetheless one of the best writers here. Advocating doesn't require media savvy and a bullhorn. Some of the best advocates for any issue are those who can become a face and voice for their issue whether that is done through writing or through discussion and media interviews. So, I would argue that all autism advocates are differently, but equally, capable of advocating for their issues.

Is the implication here that anyone that can't advocate for themselves should automatically be assumed to want to be 'fixed'/changed?

Surely that's a more damaging and offensive stand to take than the assumption that people don't need to be 'cured'?

Neither are going to be right for everyone, but I really don't agree with 'he can't speak for himself, so we should drug him up and change him'.

The focus on finding a cure, and the focus on autism as apparently an exclusively negative condition, is what I disagree with.

The first, because I highly doubt any "cure" is possible. The nature of the condition seems to imply that the brain itself has been set up completely differently. We are nowhere near capable of rewiring a brain, and even if we could, what would even be the success rate? Would such an intervention be ethical? It would presumably be incredibly dangerous. Ah, but I am speculating, but then again so is everybody when it comes to a "cure". In any case, I think it is far beyond our current science.

The second, because it means that we and society tend to see us, and more disabled autistic people, as a lost cause. Part of all autistic advocacy, that affects all sides of the spectrum, is changing views so that each individual's life, eccentricities and disablities are recognised and given the support necessary so that person can live as full a life as they can, and want to. Even if somebody is severely disabled, they still have wants and needs, even if they are the most basic.

As much as possible, and I recognise it may only be possible to an extremely limited extent sometimes, a person should be in control of their own lives. And they deserve the dignity that comes with that.

That got a little rambling, but everything I write about autism in these situations is more thoughts undergoing constant evolution

I perceive this as a personal attack. I find the tone and content of your posts on this thread to be very aggressive and offensive, but am willing to have a factual discussion with you.

If you are an individual with autism who is able to communicate, then can you provide me with fact-based, logical reasons for why you would oppose a "cure" for those that are moderately to severely autistic, especially if such a "cure" is likely to help them communicate verbally, become toilet trained, reduce the severity of their behaviors, or otherwise improves the quality of both their own lives and the lives of their caregivers / family ? That might actually help your case (and ASAN's case) much better than trying to personally attacking me as a "b@stard NT" who "hates autism" (which is how I perceive your quoted post here).

Only those that cannot argue from a logical standpoint will resort to ad hominem attacks. You are not doing yourself any favors by doing that in this thread.

Yes, I see your point. In my experience from discussions on Facebook, ASAN has vehemently attacked people (usually parents or teachers or caregivers) who attempt to show the "other face" of autism. It is like they do NOT want the general public to see that autism is truly a spectrum and that those on the most severe end of that spectrum have challenges that would bring the strongest of the species to their knees. My child is moderate functioning and I thank God every day that they have some skills although they cannot yet talk or communicate aside from in a very rudimentary manner. ASAN has - in my opinion - been all about presenting autism as this "quirky difference" when that is far from true for those who are not on the high functioning end. So, yes, I absolutely agree with you that when faces of those voiceless ones from the not-so-quirky end of the spectrum should be publicized so that a cure can be found for them (and of course HFAs can always refuse to take that cure).






No, it is this stance that people who cannot even speak a word would NOT want to gain the ability to communicate, or alleging that they would NOT want to become more independent / self-sufficient, *and* referring to interventions or treatments that would increase the skills, and improve their behaviors and living conditions derisively as attempts to "fix / change" them or "drug them up" that is more offensive and more damaging.



This is a very inflammatory comment. As mentioned previously, the intent is for my child to gain more skills and move up the spectrum so that they can one day function well and independently. If "change" is for the better, if the "change" is positive, and if the "change" results in a much better quality of life for those who are severely disabled, then why not ?

This comment brings to mind an incident discussed on another forum recently. A Jehovah's Witness had facial tumor but stubbornly refused to get treatment for "religious reason", despite admitting that he was "suffering". While autism is not tumor, and I am not in any way attempting to draw a parallel, it does strike me as rather odd that HFAs would so stubbornly want the notion that autism is all roses and rainbows that they would vehemently insist that LFA and MFAs would *not* want a cure and - if they could communicate - would claim that they do not want to grow and gain skills, that they would not want their quality of life improved because they love their autism so ! Well, how would ASAN know this for a fact, especially since they do *not* live the life of an MFA / LFA and if they do not ever have to be in the shoes of those that take care of MFAs / LFAs ?

Again, if a "cure" does become available, HFAs always the right to refuse the treatment for themselves. But who is ASAN to rally against a cure that may do NOTHING for them, but improve the quality of someone else's life 100% ?

ASAN and mild autisics advocate closing the Judge Rotenberg Center where shock treatments are used against severe autistics amoung others, they decry excusing fillicide, while they are often anti cure they advocate for more humane treatments, they advocate for eliminating sub minimum wage being legal for disabled workers(Those bieng paid subminimum wage are usually not your stereotyped "Aspie" genius programmers).

They obvoiusly do all of the above because they are Autistic supremacists who are ablelist against low functioning autistics because as autistics they have no empathy. While the prevoius sentence was sarcastic the autistic rights movements and neurodiversity movements are in real danger of failing because not only many non autistcs in the greater autism community believe the above, a seemingly rapidly increasing amount of autistics view the autistic rights movement as thier enemy because they believe the nonsense I wrote in the first sentence of this paragraph.

Abraham Lincoln

I think it is fine for anyone to advocate for autism-related issues whether they are LFA or HFA or not autistic at all.