Being accepting of autistics that wish for a cure for autism

A recent news story, filled with a lot of science and interesting information, also included the insight from a man with autism, named Jeff Hudale.

You can read the news story here, in fact, I suggest you do: What’s Different About The Brains Of People With Autism?

Now, the science behind the story and the things that they are finding out about the human brain, specifically the differences between the typical and autistic brains, are really quite amazing.

But I would like to focus on the very last part of this piece, where Jeff Hudale states:

“I don’t want to quit until they finally can get this set right and get this thing eradicated,” he says. “I’d like to have some semblance of, just be a regular person like everybody else.”

There’s been a lot of talk about this through out the autism community but despite the attention it’s attracting, I see very very little (none to be honest) support or even acceptance of his feelings.

The general consensus that I see from people is that it’s sad that he feels this way and that he’s simply confused. That somehow it’s the life time of bullying, judging and other messages he receives either intentionally or unintentionally, that has caused this man to think of his autism in such a negative light.

There’s a lot to take in there as you begin to wonder if his parents had pushed for a cure or treated him differently because he was “broken.” Keep in mind, at 40+ years old, his diagnosis came at a much different time than how things are today.

Was he raised to be proud of himself or to always be aware of his differences. Did he read a lot of what the media had to say about autism and reflect those things inward?

Did years of bullying or lack of friends cause him to hate autism for making him the way he is?

Generally, it comes down to outside forces.

Put it this way, when we generalize his reaction into a “who said what to make him feel this way”, we are sort of dismissing him entirely and “putting the blame” on others.

That’s a nice way to look at it, to be honest. It means there is nothing wrong with him, it’s society that got to him and made him think this way.

However, the “nice way to look at it” isn’t always the honest way to look at it.

See, I like this news article because it’s honest and real. He is not the first autistic I’ve heard of, or even talked to, that has expressed a desire to be rid of autism. Or to use the “fighting words” version… to be cured.

I think, and this may just be me, but not everyone needs to “just accept it” and “just be proud of it”… some people don’t and never will. They simply wish that they do not have autism.

While it’s not the approach I take nor is it what I suggest, as it is obviously negative and self defeating, it is a reality.

not okIt’s a reality that should not be hidden or ignored.

Sure we could just say that Mr. Hudale should just be happy with himself despite what anyone else thinks but that’s what we think of his life.

That might not be so easy for him to think, nor is it a requirement. We can’t just demand that of him.

Wouldn’t that be more of the “stop thinking so differently and conform to what the rest of us believe!” mentality anyway?

Besides, this line of thinking ignores the simple fact of what autism really is… a disorder or disability.

There are a great many struggles, heart aches, things you can’t do, negative messages and so much more that you have to live with for your entire life when you have autism.

Some examples for some autistics include never going anywhere loud (concerts, subways, movies, etc), never being able to play sports, never being able to make friends and the list goes on and on. I couldn’t possibly list every possible thing that autism could limit or cause you to never experience at all.

There is just so much negative in life that comes with having a disability (or disorder) that it would be a bit naive to assume that it’s only due to bullies or other people that a person would wish to not have that disability.

Now, I’m not saying that it’s never the case. I think it’s safe to say that some people do hate autism or what ever disability they may have simply because of how it causes others to treat them or how others look at them.

Perhaps some of those people could grow to accept and maybe even love having autism if only people were more accepting of them.

But I think it would be a stretch to think that is true of every single person.

Some people may just wish to no longer have autism because they simply do not want to have autism. No matter their age, no matter what others say or do, no matter what you or I think they should feel… they just don’t want to be autistic anymore.

And we need to be accepting of that too.

Acceptance means we that don’t judge people for how they feel or what they think whether or not we agree or even understand it.

That goes for people who are not proud of having autism. Not just the people that are.

Let’s talk to them. Not ignore or dismiss them.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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15 Responses to Being accepting of autistics that wish for a cure for autism

  1. Autism & Oughtisms June 9, 2012 at 6:54 am #

    That was a very powerful and important post, and quite a brave one too in the modern autism community. A beautifully honest, open-minded, and thoughtful piece. Thank you for writing this.

  2. Sharon June 9, 2012 at 7:36 am #

    This is really important to discuss Stuart. I think in an effort to counteract negative social stereotypes about autism, some dismiss the very real hardships that are inherent in the . disabling aspects. To disregard the voices of those who suffer and want rid of their autism seems incredibly cruel to me. Understanding and validation is what we all seek.
    Thank you for writing this.

  3. Dixie Redmond June 9, 2012 at 7:56 am #

    I came here via Autism and Oughtisms FB post. I wondered when I first read his comment whether it would be accepted or whether he would be ostracized as a result. You make some good points about acceptance.

  4. Matt June 13, 2012 at 8:20 pm #

    I also agree with this post and have been thinking a lot about the idea of wishing autism away. I think there are many who honestly feel this way, although we may not like to hear it. We absolutely need to listen and understand the complex reasons they feel this way, because otherwise, we can’t provide the right kind of help.

  5. Phil/Timelord June 14, 2012 at 6:54 pm #

    Stuart, there is a very important factor against these people who are wanting things this way. And that is the effect it has on support systems.

    I came here from the blog of a person who also wants a cure, who tried to use this article for the purpose you seemed to be promoting. Giving these people a voice. Whilst I’m all for a voice, the only positive these people provide is what NOT to do. The older people on the Spectrum did miss out on the things that children on the Spectrum today have access to, and that’s part of the problem. Some – certainly the person who’s blog I came from to here – don’t believe the system has changed. They are a prisoner of their past experience and (this is a key) refuse to move past it. When they do that, that’s when their voice should be silenced as irrelevant. And that’s when they need help to overcome that. But they refuse to get help – and that’s when it has an effect on those who do need help and want it. It’s all about demand. And the lower the demand (and these people you are talking about are the ones who should be using the services) the lower the quality of service, if not having no service at all. And it’s usually the latter.

    So in effect, these people are preventing others from getting the help they need.

    Depression is common within the Autistic community – across the board. This is caused by societal fear of the condition that these people are supporting. “I want to be cured” promotes Autism as something to fear, and that’s the last thing we need, especially with panic stricken parents who have a child diagnosed and need these supports – and they aren’t there because of the lack of demand for assistance and priority given to the dreaded “c” word.

    Autism has been around since at least the late 1700’s. Not enough people are doing the right thing and treating Autism with respect and not contempt. Desiring to be rid of it is treating it with contempt, and leads to coping issues that can be overcome with a change of attitude. Autism is not a disease like some people seem to think. It’s a disorder, which is not the same thing – and with the right sort of help it’s not a negative. In fact if it’s handled exactly right it can be a big positive. That’s why early intervention is promoted, as it should be.

    People who desire to be rid of Autism are clearly needing help with their lives, and they should get it. That’s certainly what I’m about in Australia, and to deny that help is a human rights abuse. And there are some people (no names) who should be deprived of their voice – because their views are completely out of date, or from an attitude that needs to change for their own sake as well as that of the Autistic Community.

    There is no cure. There is the option of improvement, and that is what should be aimed for. And we have the right to have the skills that we do have utilised. These people are holding the rest of us up by lowering demand. You’ll find that’s where all the anger is coming from towards these people.

    • Autism and Oughtisms June 14, 2012 at 11:06 pm #

      I don’t think this is a helpful view, and I feel like you’ve missed some of the key points in Stuart’s post. You say:

      “And there are some people (no names) who should be deprived of their voice – because their views are completely out of date, or from an attitude that needs to change for their own sake as well as that of the Autistic Community.”

      The fact is these views do exist, and do report real experiences. Denyng it or wishing they’d go away, doesn’t make their experiences and views go away. It is extremely important to hear these voices, understand what they’re saying and why, and respond if need be. The attitude you are promoting of not even hearing them – if you think they are 100% incorrect and confused – does not help them or the many people who feel the same way. You should be encouraging them to talk openly so you are in a position to address their concerns and argue against them openly. This is particularly the case when it involves people who are talking from within an experience – from wthin the autism spectrum. Those on the spectrum are silenced and belittled enough, without you happily promoting their further silence.

    • Stuart Duncan June 15, 2012 at 8:44 am #

      One could argue that not seeking help would diminish the demand but at the same time, the argument could be made that it increases supply for others.

      Unless you can cite a source which proves that 100% of autistics that wish for a cure are unwilling to seek help, I’m going to have to assume that some, in fact, do.
      In which case, going purely by hypothetical numbers, I’d assume that the number of autistics wishing for a cure is low and that the number of autistics wishing for a cure but not seeking any sort of help is even lower. Therefore, very unlikely to alter the balance of supply and demand all that much… if at all.

      Also, silencing a group as being irrelevant has never worked in the past. Not against women, racial minorities and it will not work with special needs people either. Trying to squash fear out of people is a very rash and hateful thing to do.

      Fear needs to be alleviated through education and understanding. And for that to happen, we must first listen.

      If someone no longer wants to have autism, shutting them up is not the way to go. That will only make them not want to have autism that much more and also make them want to shout it out louder.

      Neurodiversity is not about shutting up the people you disagree with. It’s about everyone having an equal voice. Autistic or not. Like it or not.

      Because if neurodiversity is about pushing an agenda and shutting up those that oppose that agenda… then autistics as a whole have already lost.

  6. Phil/Timelord June 14, 2012 at 11:17 pm #

    Arguing with these people (and I know this through experience) is a wasted exercise. They won’t listen. Their experiences are based in blaming their situation 100 percent on Autism, and this is not true. Their situation is caused by their attitude towards Autism, and once they won’t change that attitude – they become dangerous as I explained with regard to the threat to the support systems that the entire community needs.

    Encouraging them to talk openly only increases the fear and hate for the condition that we are trying to shut down so that we can stop the snake oil nonsense (ie mercury poisoning, vaccines etc etc) and get the right help for those who need it. Fear and hate is the community’s biggest enemy and most of it comes from these people who desire to be rid of Autism. That has to be stopped, and these people are so obsessed debate is just not an option. For myself I prefer the discredit line, and I do that on my personal website (which I’m not linking here due to one “curebie” in particular who is so obsessed with me and my views it’s unreal as well as wanting to be cured – and I’ve had to block my site from all countries outside of the Asia Pacific region until such time as I’ve completed an IP Deny structure that secures my site from abuse and misrepresentation).

  7. Phil/Timelord June 15, 2012 at 6:06 pm #

    Stuart I’ll give you two names right off the bat who want a cure and aren’t getting any help because they don’t want it. Jonathon Mitchell (Austism Gadfly), and Oliver Canby (Autism is Bad). And what about parents who insist on a cure and concentrate on stuff that is supposed to do that? Here are some more names – John Best, Daniel Faiella, Ginger Taylor and I know there are many others. And no – it doesn’t increase supply to others. The lower demand can lead to the support disappearing altogether due to the low demand. Education doesn’t work, due to the panic AND the low demand. I’m speaking about these people by the way. They only want to hear about cure and nothing else. I’ve seen it. It’s disgusting and where I live it IS having an effect. During the last state election here, Autism Victoria arranged a meeting with politicians for the purpose of more supports across the board.

    Only 30 people showed up.

    That’s bad because it told the politicians precisely what I’m talking about – and Autism Victoria blames the people you say should be heard. They’re right. It helps press the search for a cure which is a waste of money and time, and deprives support structures of that money that should be going there and not to research first.

    If someone no longer wants to have Autism – they are in serious trouble and refuse to see it, or they will blame it on Autism and repeat the demand over and over. They shut off any contrary education or understanding. It’s useless. I understand what you are saying – but it just doesn’t work.

    Neaurodiversity is not a political movement. Please don’t call it that. Neurodiversity is the word to describe brain difference. We are Autistic Activists, not Neurodiversity. And we are about getting all the supports we need across the Spectrum. Providing an equal voice for all is the reason why we aren’t getting them. The tactic must change if that is the tactic. If anything if we can’t shut them up, then we have to howl them down. And I’m already doing that to Mitchell, Canby and Best on my website.

    • mrsstone June 15, 2012 at 7:40 pm #

      Phil, I admire your passion and activism. And I understand how infuriating trying to engage with some of the people you mention can be. As the parent of an autistic child, a supporter of neurodiversity and someone who also actively campaigns against the use of alternative experimental ‘cures’, I really do understand your frustrations.

      However, I think you may be dismissing the very real suffering of the people you mention above. Assuming all struggles for autistics are socially based due to stigma and lack of supports is simply not the case for all. We must allow room for the voices of those, young and old, who suffer due to autism’s inherently disabling aspects. I think it’s reasonable to assume that there will always be autistics and family members of autistics who seek a ‘cure’, or at least ways to alleviate the more distressing symptoms. I appreciate your concern about protecting non consenting autistics from the more dangerous or non evidence based treatments. You are not alone in that. But I don’t believe that the focus on those things takes away from supports in other areas (although I do understand how you might see it that way) I am in Australia also. And almost every support service in existence here has been initiated by parents. It’s my understanding that this is the case world wide. And parents such as myself and many, many others will continue to do so. We are tax payers, we vote, and we are as passionate about supports for our kids (particularly after we are gone) as self advocates are.

      I think the idea that any focus on cure detracts from social support arguments is catastrophic thinking, and although you provided an example above from Victoria, your assumptions about why only 30 people showed may be incorrect. Many people in the ASD community are exhausted, jaded, and disconnected from the political process. Furthermore, if Autism Victoria is anything like Autism WA, many would not even have known about the meeting. To assume people didn’t come because they are only interested in a cure is unfairly dismissive. To assume parents who live with autism everyday are panicking is also wrong. Most of us are in the trenches with you. Sharing your concerns about acceptance, supports and leading fulfilling lives by embracing their autism.

  8. Phil/Timelord June 19, 2012 at 9:57 am #

    It’s not an assumption, Mrs Stone. Autism Victoria looked into it and that was the reason. Whilst it’s true that there is a lot of exhaustion etc the majority said that that was not the reason. The curebies were the reason. And Autism WA I assume is weaker than Autism Victoria in the regard you are talking about. Those numbers are going up and these idiots are having an effect. It’s got to be stopped because that’s what society wants – Autism gone. The curebies are winning the Internet battle for money, and that’s going to hurt the adults and the growing children who need those supports and so on NOW. And the government isn’t helping by doing nothing to alleviate the Internet nonsense.

    • Shazza June 19, 2012 at 6:32 pm #

      Phil I know people on the board at Autism Victoria and I shall ask if that is the case. I have to say frankly though, I doubt it.

      “The curebies are winning the internet battle for money” Now that is an odd statement. I imagine you are opposed to terms like “war on autism”, yet you are setting up this same antagonistic dichotomy in your own agenda. That is hardly an inclusive perspective.

      • Sharon June 19, 2012 at 6:34 pm #

        BTW I am Sharon/mrs stone and Shazza. Damn WordPress keeps changing my gravatar.

  9. Phil/Timelord June 20, 2012 at 12:38 am #

    Well the curebies won’t include us. I know of parents who want Aspies right out of the Autism frame completely, and they are the ones who are misrepresenting the reports about the changes in the DSM-V next year – causing a lot of panic in the process. I don’t oppose the term you quoted, because that’s what it is and it’s being waged by these people. I’m fighting against it and so should we all, and if that means not being inclusive (in voice terms I mean) then so be it. The whole end product needs to be that everyone gets the help that they need. Not what they want – what they need. What these people want is a cure, and that can only be achieved by eugenics and that’s murder by proxy and should be opposed 100 percent. They will get access to help to be better, and they should take it instead of being a pack of idiots dragging everyone down and in the process deny us what we all need by affecting government funding and it’s direction.

  10. dennis September 13, 2014 at 5:48 pm #

    Questions that need answers:

    1) what, precisely, is meant by ‘a cure’? Is this ‘relieving some of the more-annoying problems, e.g. a tendency to be spacey / forgetful? Or is this something much-more-inclusive, i.e. having the total effect of a brain-transplant (with the resulting expunging of the existing individual in-toto, and the replacement of that person with someone who is ostensibly ‘Normal’ in all aspects – a ‘skin-walker’ who essentially ‘moves into’ the newly-killed autist’s skin?

    2) What, precisely, is the **TRUE** motivation for seeking a cure, were such a thing actually available? Is this about less frustration for the individual autist, less trouble for the NTs who must endure said autist – or a darker purpose than either of the previous reasons?

    3) Who are those people who are actively seeking a ‘cure’? Are they individual autists – or are they non-autistic individuals who must *endure* said autists?

    There may well be other questions that require answers, but these are the ones which occur to me at the present time.

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