What does “Cure” mean to you?


Recently at work we had some disagreements about an issue.  In the end we realized that some of the disagreement was because we were using terms that we thought meant the same thing to everyone in the conversation.  As it turned the two sides of the argument were using a different definition.  Both definitions could be found in the literature, it just depended where you looked.  We realized we had to step back and review the definitions in the literature and restart the discussion with the awareness of the different definitions.  To facilitate conversations we agreed on the terminology and what it meant collectively.  It required one side to compromise and agree that yes the word means something different to the other side.  In order to end the arguments we needed to all start from the same definition.

In the autism community there is constant discussion, bickering, and hurt feelings over this word.  Sometimes there are huge fights over this word. Cure as defined in the Merriam Webster dictionary means:

: recovery from a disease <his cure was complete>; also : remission of signs or symptoms of a disease especially during a prolonged period of observation <a clinical cure> <5-year cure of cancer>—compare arrest
2
: a drug, treatment, regimen, or other agency that cures a disease <quinine is a cure for malaria>
3
: a course or period of treatment; especially : one designed to interrupt an addiction or compulsive habit or to improve general health <take a cure for alcoholism> <an annual cure at a spa>

Autism Speaks uses the word “cure” in many of their literature and say they are researching for a cure.  Based on some of the research Autism Speaks has funded I am pretty sure that Autism Speaks truly means cure as defined in the dictionary.  Since on their website they even go further to say they want to prevent autism.  This is not a post about the evils of Autism Speaks.  There are many posts that have already taken that on just a couple of my favs are here or here.  Some people defend Autism Speaks because they provide valuable information to families, they are out there spreading awareness, etc.  I get that because back not so long ago I was involved with Autism Speaks.  Why? Because when my son was first diagnosed that was the organization that was in my face.  When I went to events they talked about wanting to help autistics.  They seemed to be very caring parents at the events that just wanted to help their kids.

I opine that most (some are in jail for not) parents just want to the best for their kids.  Every parent of autistics I have interacted with all come across as caring for their kids.  But then one of them will “vent” by saying they hate autism or that autism sucks.  Or an autistic tweets one version or another of how they don’t need a cure.  The other side responds.  I have recently asked a parent if they really wanted a cure or if they just wanted certain behaviors gone.  They asked if there was a difference.  Yes there sure is!!  I have wondered for a while how many others don’t see the difference.

To me (based on above definition) cure means to treat/alleviate all of the symptoms of a “disease”.  So much of that makes me bristle.  I don’t feel I have a disease.  If you are starting to think that is because I am high-functioning- don’t please just go read my previous post on acceptance.  Let’s look at my son since he is professionally diagnosed and has more recently had severe “behaviors”.  I think as parents we sometimes focus on the behaviors.  Sure when your kid (my son) is smearing poop on the wall, refusing to do school work, flipping desks over at school, yelling at you, staying up half the night, you just want those behaviors to end.  In the moment of exhaustion they (me) aren’t thinking well autism also makes my child a great musician, a brilliant mathematician and able to someday do something wonderful like develop the Theory of Relativity (not my kid but I don’t know yet what he will do :-)).

When someone says I want a cure I think some people are just meaning that they want the behaviors to stop.  Behaviors are a way of communication.  Again let’s look at my son.  He is a pattern thinker and he also has extreme sensory issues.  As mentioned this makes him a great mathematician and a brilliant musician.  However the same super sonic hearing & desire for patterns made him hide under tables at restaurants or in the cafeteria at school.  (in case you didn’t know school cafeterias are chaotic and noisy).  When forced to go to the cafeteria or even worse gym he would act out.  Instead of “curing” his sensory issues we worked on his ability to recognize what was causing his meltdown.  He has learned to remove himself from the situation or advocate for himself.  He has also learned to control his emotions so that he doesn’t blow up.  He still has super sonic hearing, loves routines, thinks in patterns, and looks at the world differently than others.  We helped him work through what was causing the behavior.

This took work on all of our parts.  We still have work to do.  He makes improvements every day on his own timeline.  I don’t want a cure for him.  Yes I want him to be happy in his life.  I want peace and happiness as well.  The only way to get there is to work on behaviors and to work on acceptance.  Flipping desks would never be accepted but maybe if they had realized and listened to his needs to begin with he wouldn’t have flipped the desk.  In fact I know that for sure because I told the teacher exactly what triggered it and how they did the exact opposite of what I told them to do.  I was told he needed to learn to deal with stuff better.  An 11 year old autistic needs to learn to deal with things better, well duh he is 11, why don’t you meet him half way.

That’s what autistic adults are told as well.  We need to deal better and not be so sensitive to the word cure.  Autistics are literal.  When you say we need a cure we have the definition in our mind.  To us it reads as you want all our autistic traits gone.   I wouldn’t know how to all of a sudden be a different person.  Sure I have sensory issues so I shop accordingly.  I am nervous about the social part of the formal event coming up but I have gotten better over the years.  I like my hello kitty lunch box.  I like having “scary” memory, it drove me nuts when I was sick and had memory loss of events.  I was told I had “normal” memory- it was awful!!!  I would not want to be like that all the time.  I like being my unique, interesting, scary “memory” self.  And now that my son is away from the judgement from teachers and other kids he is finally happy being himself too.

“Preventing” autism means that you would prevent me from being born.  When Autism Speaks and other parents talk about how it is a disease that needs prevented or cured it sends the wrong message into the community.  For better explanation of that see this post here (warning for shock value but I totally agree that these messages affect how autistics are treated)  Some autistics said that post went too far.  I don’t know- if all of these people are saying it is a horrible disease well why wouldn’t that lead to negative outcomes for me, my son, your kid, or whoever you know (or maybe don’t know because they blend in so well).

I’ve seen parents say anyone who speaks positively about autism is just painting an inaccurate picture of rainbows and unicorns.  My son wasn’t painting rainbows with his poop and I sure am not painting rainbows for new parents.  But hell yes I want parents to know that their kid is happy and that the best way to help their kid is to advocate for acceptance and help their kid with working through their struggles to the best of their ability.  An autistic child may not live up to your expectations when you want them to but they may also exceed your expectations when you least expect it.

I want to call a truce.  I want us all to agree that the word cure and prevention means what they mean.  Don’t use it to mean you want to help your child with certain behaviors.  If all you mean is that you want to advocate for your child, that you want them to be happy, that you want to help them work through issues and behaviors then say that!!!

Please, let’s get the message into the community.  Treatment & supports – yes.  Cure & prevention – hell no!!

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Comments

  1. I’m with you! I am a 35yr old female with Asperger Syndrome and I have a 6yr old daughter who also has Asperger Syndrome (guess there’s NO blaming the dad on that one then! 🙂 ) … To me Asperger Syndrome has it’s positive AND negative points. I like the analogy that while NT brains are like PCs, ASD brains are like Macs … BOTH of those operating systems ALSO have their positives and negatives … some people favour PCs over Macs, some Macs over PCs … BUT most people (hopefully) understand that there are some applications for which PCs are best and other applications for which Macs are best … and so their BOTH destined to co-exist and complement!

    That said – I beleive being an Aspie living in a largely NT world can definatley be MORE stressful / confusing / taxing than for your average NT. For this reason I am willing to ‘concede’ that Aspergers is in some sense a ‘disability’. I will happily accept carers payment for looking after my daughter because I can see that she is somewhat more ‘high maintenance’ than the average kid 🙂

    However, IF someone offerred me a ‘magic pill’ that could make my Aspergers instantly go away and make me NT – or do the same for my daughter I would be EXTREMELY hesitant to take it!. Being an Aspie is part of who I am – the positives AND the negatives… what I strive to do is to live the best, most productive, fulfilling Apsie life I can. I’m not entirely sure I’d know who I was if you took my Aspergers away totally!

    That said – I also have some other ‘co-morbid’ conditions I believe are critically linked with my Aspergers – namely tics, anxiety disorder and depression… and gut-health issues to. I see NO real advantage at all in any of the above ‘co-morbid’ conditions! … my aim it ‘treating’ my (& my daughters) Aspergers is to remedy these ‘co-morbid’ conditions – so that I (and she) can live a happier, more productive and fulfilled life… AND I have tried ‘conventional’ treatments for ALL the above ‘co-morbid’ conditions and they have FAILED … why? … I believe because they are intrinsicly linked to my being an Aspie … and they need to be treated as such.

    One last note … I can really understand why parents – particularly of severly autistic children – seek a cure … I doubt if there are any Aspies or Auties out there who can see any advantage in being incontinent or unable to communicate their thoughts and desires … and as such I commend the search they are going on to improve their children’s health … BUT from my (unique?) perspective – I would like to think that these parents ‘recovered autistics’ would much more closely resemble an Aspie or person with HFA rather than a NT!

    It may NOT be so much fun living with ASDs BUT the world NEEDS people with alternate persectives / ways of thinking … so I definately do NOT think we need an Autistic ‘genocide’ 😦 … Let us live! … Help us to be our best! 🙂

    • Thank you for stopping by! I somewhat agree with you about understanding some parents wanting a cure. Have you ever seen the documentary Loving Lampposts – it was wonderful how it showed different functioning and questions what is high functioning or low functioning. I try not to use those words but i know people perceive I am “high functioning” based on their standards. As a parent I know it would be hard for me to accept if my son couldn’t speak. He has communication issues and often says the wrong words. But he does talk. It is hard to say how I would feel in their shoes but again I feel they are focusing on the one thing. They want their child to communicate. That doesn’t necessarily mean a cure. With treatments and supports they can learn a way to communicate. There are many adult autistics that have found other ways to communicate. They use computers and have been very clear that they are happy being the way they are. Helping autistics be their best is exactly what needs to be the message. That is the message from many autistics – not a cure but supports to help!

  2. Thank you for doing this post. As usual you have given me a lot to think about. Before I start I guess I should say I am a NT parent of 2 children (3 and 5) from Australia.

    I agree with you that words are important and the words that we choose to use make a significant difference in our own perceptions and of those around us. In regards to Autism I have mixed feelings about the word “cured’. To me it is often used to make it easier for NT people outside of the wider autism community to understand the need for therapy and often to get funding.

    For me I don’t know what I think about the word. So someone that loves words and communicating I often find that I get frustrated because I can’t find the words to communicate what I feel or want in relation to Autism without it being wrong or offending someone. Both of my children are non-verbal, are not toilet trained and need help with many general living skills. My daughter is involved in an intensive at home ABA program (~30 hours per week) and my son attends a specialist ABA school. Both are very very expensive and we have to pay for about 85% of it (in Australia there is almost no government funding and health insurance doesn’t cover it). Their therapy dominates our lives, has taken away our financial security and limits what we can do as a family.

    I can understand and appreciate especially people with Aspergers being proud of who they are but at the same time I hope that people can understand how hard it can be for families to just get by and help their kids be able to participate in society (in school, work and the community as a whole). While I don’t know what words to use I just wish things were easier … that my kids could communicate their desires, needs and wants … that they could tell me what they were thinking and feeling … that they could talk back to me … that they could play with their toys without having to spend hours being shown how, that learn basic living skills like toileting, washing, dressing weren’t so hard. I wish that they could spend less time in therapy with adults and more time climbing, chasing and playing with their peers. And above all else I wish I could tell them that I loved them and for them to understand …

    I am not sure what words could encapsulate all of this. What should I say to communicate all of this simply and succinctly.

    • Yes the word is sometimes used to get funding for therapies but then they also use words like tragedy and epidemic. It is hurtful for autistics to hear those words. It is also those words that cause parents to lose hope. Other diseases – cancer, MS, heart disease they use the word cure. For an autistic though we don’t like to think of it as a disease. However if people don’t understand and only focus on positives then people may not understand why therapies needed. In US it isn’t much better. There are governmental programs but only if you make below a very small amount. So many people self pay for therapies and might as well be making that small amount. It isn’t really fair. Plus all of the other costs that people don’t think of- sensory toys & having to replace lots of things because they have been broken- by throwing or chewing or picking apart. Sorry I feel like I am not really responding but now I think I am getting to my point- that therapy and supports is what we autistics would want funding to go for. Although there are debates about what type of therapies are better than others. But I am not educated on the topic enough to get into that debate.
      However I do know that organizations like autism speaks puts the research funding towards “cure” and they don’t mean providing supports or therapies. They mean eradication of autism. From people who currently have it and from future generations. So much money being spent for that instead of actually helping autistics. I am not sure how australia is but in US if you fight hard enough and your child has enough deficits they can receive some therapies and supports in school. When someone turns 18 there is next to nothing for supports.
      I am very proud of who my son is but we have had some really rough times and I definitely wanted it easier. There are still things he (and I both) struggles with that I wish was easier. Today I had horrible issues with communicating and social interactions at work. Was just awful. I know that is nothing in comparison to struggles my son has had in past few years though. I have never had the same communication issues but other autistics that have learned to communicate through computers have been pretty clear that they do understand what is going on and that they just communicate with the world around them differently.

      simply and succinctly if I could change things I would want the message to be that autistics have a different neurology and think differently but do have impairments with certain functioning. The only way to help them (or your child) be the best autistic person they can be is if they receive the appropriate treatments and supports. And above all are accepted for who they are.

  3. Really appreciate your tackling this topic. I am sending the link of this post to the organization, icare4autism, as I think they will find it helpful as they grow and learn. The “cure” word is a tough concept for people who use it to mean help or alleviate some of their child’s painful issues, such as an inability to communicate, incontinence, food allergies, internal pain and stresses. But the more Autistics (the wide range of Autistics both verbal and non-speaking) speak out as to why they do not want a “cure” the better the understanding. I don’t know that this message can be stated enough. I think sometimes those of us who read a great deal and know many who are Autistic or are Autistic themselves we think – Oh this has been written about, talked about – but that thinking can’t stop us from writing about it again and again. This message needs to be continuously discussed. So thank you again for this. It’s so important.

  4. What a great message. I got this sent to my in box. I’ve been avoiding all blogs with talk about cures. Doesn’t matter what side your on I’ve just been avoiding reading about it. But then I thought what the hey let’s read. Not disappointed that I stoped by to read your blog. Some people take things too far. They start to be too one way or the other. I loved your question is it a cure people want or is it they are just wanting to end the hard behavour. The only thing I’ve ever wanted to stop was the barriers I faced at schools. There was my biggest pain. Next was my family not being understood. Oh and the bullying. The bullying I got from mothers who didn’t have a child on the spectrum and the kids that bullied my kid. I don’t think there is a cure for ignorance but there maybe one coming soon. I have to say I too have had the hard night. The tough days will bring you to your knees. I often joke that that’s when I have to remember to pray while I’m down there. I feel I approach autism in a different manner cause I think of it as just a way of learning and being. I want to teach my sons. I need them to get the opportunity to learn. Learn their way on on their time. I have been challenged by many that using speech paths, OT, SI and ABA is looking for a cure. But I feel it is not a cure. A cure would be that they would be different to the point it is not them. The therapy I mentioned teach skills. I know my view point

    • Oops the rest got deleted. I was going to say my opinion is not the most popular. (But I never have the same point of view as anyone any way.) but education is very important. Some day an educator or politian may stumble across blogs like this one and read. ( well I hope one might anyway) what they will read is a good blog peace well written. But I hope they will read the comments too. Can you feel the man in one of the answers pain? I can. When a politian hears no cures please I hope he really listens to the part in your blog that it means don’t take every part of me away. But please teach me. You see they them selves ( the powers that be) may think finding therapy is a cure. If that’s what gets someone off there ass to do something then ok I’ll take it. Just leave me alone though. I’ve battled hard to get my kids to be seen as worthy of an education, worthy of skills. I’ve had to hold up documents stating my right and my kids rights to people who only see my kids through their eyes. My kids gotta fight for them selves when I’m gone. I’m fighting for skills so they can look after themselves. I’m doing it so they can hold jobs and have kids too. Yep said it! I had kids so should they. And those kids are going to need an education too. So I’m hoping for more speech paths more ABA schools. More funding and more time. I really don’t care half the time what someone calls it. (But if you think I’m giving my kid bleach pills I’m going to slap you hard I sware. Cause people really are taking stuff just too far) my kids they don’t want to be counted out of life. I know that they are fighting every day in their own way to be included. If to be more NT is to look after themselve,get to make friends, get a job or what ever then they do just want the chance to do that. One of my boys struggled hard to talk but with hours of therapy he learned to talk. He can now print. He’s making friends. He learns every day. He’s not cured. He’s just learning but if some politian needs to think of It that way then ok cause his little brother still needs more hours and a chance to learn and grow too. That’s my crazy point of view. Getting off the soap box now.

  5. AspieSide,
    Sorry I did not have time to stop by sooner. Posting the definitions was smart and your points are well made. I’d share it on Google Plus, but I know you shared it in the comments on yesterday’s post. I am just going to share it on Twitter where I am safer. ;o)

  6. Well said. I am not autistic and I don’t think I am overly literal, but I bristle at the word “cure”. We are not talking about a tumor here; autism is part of my son and to get rid of it would be to fundamentally change who he is, which i would never want to do. Thanks for this post – love it!

  7. Unable2makeALongStoryShortMom says:

    I think the problem is&always has been the word “cure”. I think it is overused&a fallback word for ppl to use when quickly stating their stance on the issue. IMO, its linguistically incorrect BECAUSE the meaning of the word ‘cure’ varies so much for ppl using it (or not using it) within the context of autism. Many factors come into play when a speaker makes a word choice & alot more than just dictionary definition can be inferred by the listener on the receiving end. As we all know autism is COMPLEX. It affects everyone’s lives differently. While sensory issues may be ur biggest challenge, they barely affect my son. But ur child may have been hyperlexic and able to read grade levels above his peers. My son’s visual processing issues,dyslexia&dysgraphia make reading/writing his biggest challenge. “Cure” implies there is (or will be) one definitive, specific, universal treatment/therapy/medication that is well-documented/well-established to positively affect ALL persons with autism equally. Autism’s complexity in & of itself makes THAT impossible, without even including the fact that there are multiple levels of severity to consider. We know very well-when u meet one person w autism u meet one person….& what may help one person may not help another…The treatments/therapies that have helped my son may be ineffective for u or ur child. Diet & supplements have had a profoundly positive effect on my son’s body & mind whereas they may not be very helpful for someone else. Some parents & professionals swear by ABA and that it is the most effective therapy for autism. Well, not for my son. ABA was not the right fit for him. Speech therapy has proven to be his most beneficial therapy. When something is this complex, how can it be measured by ONE SINGLE WORD?
    We all know the saying “well, I don’t know how to say what I want to say-it’s hard to explain.” YES, it IS hard to explain. This is a very controversial, personal & multi-faceted topic. I think that’s why many ppl wind up relying on one of the 2 choices constantly presented & constantly thrown around by the “pot-stirring” media: “Yes,cure”/”NO cure!” It is easier to just state the side u stand on for the sake of getting your point across quickly & without having to put much thought or effort into it. I think, most times, ppl believe choosing to use the most commonly heard language surrounding the issue is the best way to make sure their perspective is understood. I dont. And i refuse to subscribe to it.
    There’s nothing positive that could come from closing ur eyes&ears to a differing opinion. We need to understand- it’s only natural that one’s OWN experience w autism directly impacts how they form THEIR opinion. Nasty names & using hurtful language does not change another’s opinion. Education, information & new experiences can, though! Just bc I believe in a biomedical (as well as traditional) approach to treating autism does NOT mean I use bleach enemas & support auti$m speaks. Generalizations & assumptions need to stop also! I happen to agree w ur sentiments regarding AS. They have done nothing for me or my son. Their ‘light it up blue’ bullsh¡t is a pointless coverup to make them look productive as well as those ‘walk now’ fundraisers. The raised funds r going straight toward the salaries of the ppl on the payroll. Who knew one could make a profitable $431,658 working for a non-profit?!? I’m in the wrong career. All their so-called research into genetics is for what? If its all geared toward prenatal testing to offer abortion-I certainly DO NOT agree! That is NOT the kind of “prevention” or “cure” I support. And that is NOT the goal of organizations like GenRescue,TACA& NAA. It’s ironic to me how many “Neurodiverse” autistic adults despise biomed & their proponents when in reality, this version of prevention&cure is so far away from the horrible ideology of aborting predetermined autistic fetuses & it’s not based on the research they claim will find a one-size-fits-all wonder cure! BC with all the research that’s already been done & all the studies out there, “that” kind of research is a waste of time. We know ways (NATURAL WAYS) of minimizing/reversing the debilitating, disabling, unwanted aspects of living w autism. And we know that any autism treatment implemented MUST be individualized in order for it to be successful. BC we know the importance of understanding the impact environmental factors have on one’s human physiology. It’s about healthy & toxin free living for optimal body performance, which has a huge impact on thinking, functioning & behavior. It’s really as simple as belief in the connection btwn the body & the mind. Helping an autistic child become healthy, happy & able to reach their full potential does not change who they fundamentally are. So silly. Quite frankly, the opposite happens. As struggles&obstacles are overcome, it becomes easier & easier for one to show who they truly are, with family,friends & the world. A once dependant&limited child can become their own self-advocate. Isn’t that great? Isnt that the goal?
    Look. Share ur opinion, how u came to form that opinion, & why its important to u. Two ppl that disagree CAN discuss this w/out the intent to convince. The aim should just be ‘understanding’. We should be trying to close the gap btwn us. I think this is a good way to start. Listen to/read the stories of those u r in disagreement with. Ask the questions u need to so that u may understand how they came to form their opinion & why its important to them! Then let them do the same. U may realize that u have more in common than u first thought. And possibly learn something new or helpful along the way! 🙂
    [Sorry soooo long.Told u I can’t answer this w one word.Or one sentence.Not even 2 paragraphs, apparently…]

  8. thinkinclusive says:

    Yes! Thank you for this post! It is a matter of language but it is also about our assumptions.
    Great job!

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