The Great Divide – Cure Vs. No Cure

This post reflects on my personal feelings on one of the most touchy subjects in the Autism realm: cure vs. no cure. It’s what I see as “the great divide” in our community.

Some say all Autism Spectrum Disorders are one and the same in this respect but I personally see this very differently. It may very well be the same diagnostic code in the future but I do feel that while people with Asperger Syndrome (such as myself) versus severe Autistic Disorder both have significant challenges and some are the same, the approach for treatment, in my opinion is not.

Some say that Aspergers is a lifestyle. I highly disagree with that. I don’t believe that a neurotypical person could live the life as someone on the Autism Spectrum or vice versa. I think its a matter of bridging the gap to understand each other better because after all it is a neurological condition.

Some say that there should be no cure for Autism. To me, that is sort of like saying “there should be no cure for foot disorders”. While they are all connected, as truly everything is connected, it doesn’t make it the same. Do I wish that those who suffer from severe autism could live with greater quality of life if they are suffering, especially with co-morbid diseases in the mix) of course I do! I don’t wish any sort of suffering on anyone for any reason.

Now does this mean that I believe that Aspergers should be cured? Define what the cure would be. Would it help me make more friends? Would it reduce my daily high levels of anxiety? Would it help with coping with severe sensory issues or perseveration? Or would it make me some one else?

There is the difference to me. To find a way for people with Autism to struggle less without being any less of who they are as a person. I grew up with a boy for a short time with severe autism and there were times when he seemed so happy and content, more so than many neurotypical people I’ve met. So it is hard for me to say that all aspects of Autism Spectrum Disorders are bad or cause suffering. I believe the intensity that Aspergers has given me has strengthened my writing, but on the flip side sometimes I would almost rather feel less of the intensity in exchange for a better level of social awareness and ability to handle social events.

With that being said, I am considered very high functioning, and I cannot nor would I ever attempt to speak for someone who cannot speak about how they feel on this subject. Why? Because I am me and that person, just as anyone else on this Earth does, has their own feelings. I cannot speak for others with Aspergers. I cannot speak on behalf of someone with Autistic disorder. But I can speak for me.

What I want in a cure is less of a cure when it comes to Aspergers and more of a better way to learn to understand the world around me. I don’t want to be someone else.

I want to be me – but more comfortable with being myself if that makes sense. I don’t take pride in having this disability as some might, but I take pride in the steps I have taken and personal growth I have made to better interact with others in ways I couldn’t have comfortably done so before.

So, in essence, I’ll bet you’re saying I am “pro cure”. That’s not exactly correct. I find myself somewhere in the middle. I don’t want a cure that would make us different people, no, but maybe better treatment options across the Spectrum for coping.

But I find myself wondering about if and when I have a child one day and if there was a vaccine that wouldn’t change who they were but would help them integrate more and live a fuller life (this is of course a subjective idea), then I think I might choose to vaccinate to prevent other forms of suffering for their children. It really depends on what it’s doing.

But here is the kicker, and please hear me out here, I believe that my personal belief about this doesn’t and shouldn’t reflect anyone else’s necessarily. I don’t judge any one who says “no cure” or says “Find a cure” because I believe that at heart the reason people say “no cure” is because of the idea that Aspergers is a piece of us and to destroy it would destroy quality of life and then I believe that those who seek a cure – seek an end of suffering. In the end, aren’t both ideals sort of a common ground? Both sides want greater quality of life but see it differently.

My greatest goal for this post is not to begin a debate. My goal is to suggest the possibility that this great divide isn’t as divided as some might assume?

Aspergers isn’t truly part of who I am on the inside. It’s a disability. I don’t think I would be less of a person if I didn’t have Aspergers. It’s not me, just something that highly affects how I function.

However, God made me the way I am, and therefore I am dealt this card. Would it be nice to have life be easier, sure. But as the cliche goes “No one said life would be easy” and honestly some of my challenges have made me a stronger person.

You’re waiting for me to go one way or the other here right?

That’s a shame. I really see an opportunity for both sides to stand united to honor and help those on the Autism Spectrum.

Both sides are fueled by the common bond of love for mankind or their loved one. So honestly, I don’t stand on either side personally. I’d like to stand right in the middle, and wait to see who can join me there.

About Gretchen McIntire (formerly Leary)

I am 34 years old, I live in the Raleigh area, and I am writing from the perspective of an individual with Asperger's Syndrome.
This entry was posted in ASD, Aspergers, Autism, Uncategorized. Bookmark the permalink.

4 Responses to The Great Divide – Cure Vs. No Cure

  1. Joanna McKnight says:

    Yup I’m with you :o)

  2. suburp says:

    I ‘like’ your post as a reflection on this, but I disagree with you on the significance of the divide in the ‘autism community’. i am like you, in the middle of the two positions because i can see good and bad in both of them. I read a statement from one young person with Asperger’s (can’t remember boy or girl sorry) who said : “if there was a cure, I would just take half the pill.”
    I totally get that on the “high” end of the spectrum, self-reflection allows you to question what part of your personality is AS and to worry, a cure would make you lose that too.
    You say Asperger’s isn’t part of you inside, it’s a disability. I agree. But it has shaped your personality too.
    I feel that there is an important misunderstanding on the side of some parents of children with classic/severe autism on why some autism self-advocates firmly say ‘we need no cure’.
    My stand on this is of ethic but also pragmatic nature. Mostly because it seems that a cure, let alone a full understanding of causes and context of autism, still seem so far away! But I think if you are fixed and focused on the search for a cure, especially as a parent of an autistic child – here, now – how much true acceptance of the ‘uncured’ child can you really bring up, permanently hoping, thinking, demanding even, that someone finds, tests and produces a cure that will turn your child in the child you were expecting initially, before autism unfairly took it from you, “took” that child you actually want to have? I do understand it emotionally, when desperate, tired people see autism as ‘disease’ and dismal that should be removed if possible, and eradicated if recognized before birth (? to what degree, where are the limits to autism eugenics? how severe is too severe for a life worth living? who decides that ? who will we ask?) Those parents living on the ‘severe edge of autism’, busy and exhausted, I understand that they find more consolation in a somewhat distant and undefined cure than in even more work with the child to find ways to allow to get communication even out of the ‘non-verbal’ autistics..And I can’t help but think that this would benefit to their own children much more than yet another ‘walk for a cure’ or funds for research on a cure.. Then you see the recurring “you are not like my child”, the “you can’t speak for my child” that autistic adults seem to be confronted with by parents and me and you both, we try to word things cautiously, not to upset them in their so much more disadvantaged position, because that is not our intention. But upsetting anybody is also not the intention of those ‘no cure’ advocates either. The dialogue is completely broken. The divide is massive out there.

    • I agree with what you are saying too in most ways. I just feel like part of the divide is due to just how broad the spectrum is because I believe that both sides have difficulties that can be severely debilitating but in slightly different ways. For example, individuals with Aspergers may have high cognitive function and verbal abilities however may not be able to socially communicate appropriately at all so in essence how much improvement is that over not being able to speak when it comes to relationship development? It’s challenging to see both sides and see that both sides have some solid points. I do think that AS has help mold me into who I am but not necessarily primarily due to the AS but because adversity builds character within itself. However, I do see how some of the downsides of AS can be seen to a certain extent as an upside when it comes to talent but the intensity itself can be almost painful for me even if it brings out well written poetry at times and I wonder the same for other folks on the Spectrum.

      Writing out this post has made me think about many different pieces of this puzzle that makes us a community but the problem for me that I can’t let go of is this: can we really call ourselves a “community” if we are not unified.

      After all, “unity” is literally a part of the word itself.

      • suburp says:

        he! GREAT find with ‘unity’ in the word ‘community’. Never realised that. =)
        I personally do NOT believe we are all part of ONE autism community. I do like to associate and exchange with certain parents and certain self advocates who, like me, see the benefit of communication between their different life experiences and view points, and see some similarities that help understand autism just that little bit better. but there are others that are so far off in their actions or words of what I find morally acceptable that I do not want to even engage in exchange with them – unless they change. I do not accept as well the graduation of ‘severity’, the ‘high’ and ‘low’ functioning levels as an indicator of how hard your individual life experience – as an autistic or a parent – actually is. People have different thresholds to adversity, and a “fully functional” grown up with Asperger’s can suffer of debilitating depression, there is no fair comparing of how affected one person or the other is on the spectrum. Same for the parents.
        It’s true, the great width of the spectrum is responsible for some of this divide but also the very human nature of siding with those that are most alike us. Trying to be a critically thinking, yet open minded person when you are confronted with all the different sides and groups and their different agendas and experiences.. while still keeping focus on what is right for your child AND for yourself (I do not have autism, but I have my own limitations with social interaction through PTSD).. that can be pretty hard. The cure.. I don’t know,
        it’s just not even a priority in my understanding of the current situation.
        How much easier and better would the life of ALL autistics already be if Acceptance (not only awareness) would be a broader attitude towards them, instead of the more predominant desire of society to change back to normal, reject or even discriminate..

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