Monday, April 2, 2012

Care vs. Cure

One issue that persistently divides autistic self-advocates and their critics is the value of seeking cures for autism, and I believe part of the reason this is so misunderstood is that care and cure are conflated. Today I'm going to address this distinction and try to clarify the rejection of "cures" by the autistic community.

"Cure" derives from the traditional medical model of disability, which can be summarized as the belief that people whose differences prevent them from participating fully in society need to change, or be changed, to fit society's expectations. This is is contradicted by the newer social model of disability, which proposes that society can be more flexible to accommodate people with differences.  For example, if someone can't walk and uses a wheelchair, there are two ways to help them be independent. Under the medical model, the solution is to cure the condition so they can walk. Under the social model, the solution is to provide curb cuts and elevators so they can travel independently.

In the context of autism, you see this application of the medical model of disability when professionals and parents say that autistics will be miserable unless their autism is "cured" or that autism is such a "devastating disorder" that we must work to prevent future children from being born with autism. Deconstructing this would take a whole blog post, so let's just get to the point of today's blog: the false dichotomy of "curing" autism vs. autistics attaining a reasonable quality of life.

This is where the conflation of "care" and "cure" are problematic. There are no "cures" for autism; however, there are many ways to provide care for autistics that improve our quality of life and maximize our development over time.

"Care" simply means providing support to make differences less problematic, acknowledging that the person will still be different, even though their functional capacity may improve over time. This is consistent with the social model of disability and the principles of independent living.

In developmental disabilities such as autism, this is a very important concept to understand. "Curing" someone's autism would mean somehow transforming their nervous system, including (and perhaps especially) the parts of it that determine their personality. (Although plenty of non-autistics would settle for autistics behaving "indistinguishably from their peers" even though their thoughts and sensory reactions are still autistic--plus they feel shame for the way they were born.)

Caring for someone autistic would mean teaching skills they don't automatically learn, finding compensatory strategies for sensory issues or areas of reduced skill, and providing assistance for tasks they can't do on their own. And if they have comorbid medical conditions, care includes treating the medical conditions instead of blaming them on the person's autism and assuming that the only solution is to "cure" the autism.

Certain health problems that seem to be common in the autistic population, such as seizure disorders and digestive issues, can also seem to worsen the severity of autism symptoms. Often, parents who treat the medical issue and see improvement claim this "cured" the autism. Relieving these medical issues allows them to interact with the environment more effectively, but they are still autistic. However, if an autistic does not have seizures, anti-seizure medication is likely to give side effects without benefit; if they don't have celiac disease or related digestive issues, a GFCF diet would be expensive, stressful, potentially nutritionally-deficient, while offering no benefit.

Parents who spend their time and money seeking to "cure" their child's autism could be spending that time on better care that would help their child develop to their full potential, even if that potential may not be what the parents expected. For example, many parents chase so-called "biomedical cures" to "recover" their children because they assume, for example, that the right combination of chemicals will reverse the autism that prevents their child from speaking. (Today's not the day I'm addressing the issue of subjecting children to untested and often painful treatments.) These treatments are often costly and time-consuming, but because they offer the illusory hope of a "normal" child, parents will often pursue these treatments rather than finding other methods of communication.

Many autistic children (and adults) communicate successfully by methods other than the spoken word. One simple but successful method is the Picture Exchange Communication System (PECS), which is based on cards with pictures. This is the predecessor of various Augmented and Alternative Communication (AAC) devices that can speak for the user. The main drawback of the original systems was their bulkiness and expense, but this has been mitigated somewhat in the adoption of the iPad by many families.

It might not be "expected" social behavior to walk into a store, a restaurant, a doctor's office, or even a job interview with an iPad that talks for you, but if it works, society can just broaden its expectations. This technology could even be useful for people without autism, much the way people have come to expect curb cuts when they have strollers or rolling luggage. Imagine not having to stress a sore throat by talking because it's no big deal to just open a talking-app on your smartphone or tablet. Imagine being able to speak this way if you lost your speech abilities after a stroke or injury. It might be slow compared to just speaking naturally, but it would give you more independence than not speaking at all.

I don't think we need a laundry list of autism manifestations and how to apply principles of "care" to each one instead of "cure." My point is that parents who apply the medical "cure" principle to their relationship with their autistic child will be much more frustrated than those who apply care principles. They may very well create a self-fulfilling prophesy that their child will be unhappy--because the parents have forced unnecessary medical treatments and treated them as a burden and a disappointment.

Many parents and their children are enjoying the benefits of doing the best they can with what they have, even for children who are severely affected. Many autistic children have great joys in life, whether or not they do everything non-autistics do--and the same with autistic adults. One of the biggest obstacles for adult autistics is prejudice based on ableist assumptions. We face prejudice and offense taken about things we do not do maliciously, such as flapping or failing to recognize people, and the assumption that anyone who needs care and support after childhood is a failure.

Fighting this prejudice is the core of Autism Acceptance Month, rather than Autism Awareness Month. Although the group that widely promoted the worst stereotypes about autistics in the name of "awareness" has toned down some of their rhetoric, most of what the public thinks about autism and autistics is still very negative. We are still "othered" because of our differences from the social norm. Those promoting the "cure" agenda use our differences against us to raise funds for a "cure" or to prevent us from being born. Previous generations were hidden in institutions or in plain sight as the weirdo who got bullied. 

Until society sees autistics as people with differences who need social acceptance and perhaps some degree of care, rather than as poor broken people who need to be cured, autistics of all ages will face difficulty in living the best lives they can.



23 comments:

  1. Replies


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  2. HOW I WAS CURED TOTALLY FROM AUTISM
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    ReplyDelete
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    ReplyDelete
  4. what a greatest surprise to me that i was cured from Hiv/Aids virus by a powerful herbal doctor, it was just like a dream to me i taught that their is no cure for Hiv/Aids because for about six years i spent so much of my money in hospital but no improvement i was confuse in life until a friend of mine introduce me to this herbal doctor i contacted him on email: nativehealthclinic@gmail.com or WhatsApp/Call him at +2348140073965 if their can be any help and he promise to help me, he prepared a herbal medicine for me i followed his instruction after 18 days i went to hospital for test but i was cured it was a greatest surprise to me so i decide to share this testimony. a very big thanks to this herbal doctor who save my life, please if you have this kind of sickness or any disease do not give up you can contact him whatsapp him on +2348140073965..

    ReplyDelete
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    ReplyDelete
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    ReplyDelete
  7. I am very happy to inform the general public that I am finally cured from Herpes simplex virus recently with the use of herbal medicine, the powerful herbal medicine cured me completely and i was tested negative after usage, I am using this means to inform other's who have the virus that there is a cure for Herpes simplex 1&2 . It is absolutely true. I was cured by Dr Alli, only him I can recognize who cure Herpes perfectly well. I will advice you to contact this great doctor who God has send to put an end to the sorrowful and deadly disease. Contact him via Email  Allispellhelp1@gmail.com or add him on WhatsApp +2348100772528

    ReplyDelete
  8. Thanks to Dr. Iyabiye who cured me of Hepatitis B with his herbal medicine, I fell sick September 2019 with symptoms like: ribs pain, dark urine, headache and lost of appetite. I when to hospital and discovered that it was chronic hepatitis. I was given some antiviral drugs to slow it down the viral load so that my liver will not be damaged, but the drugs wasn’t working after sometime and my stomach stated swollen. I came arose his recommendation online while I was searching for help hence the hospital couldn’t help anymore, he administer his medication on me and I was cured after taken the medication. If interested reach him through: iyabiyehealinghome@gmail.com phone +234-815-857-7300

    ReplyDelete
  9. I am here to give my testimony about Dr Ebhota who helped me.. i want to inform the public how i was cured from (HERPES SIMPLEX VIRUS) by salami, i visited different hospital but they gave me list of drugs like Famvir, Zovirax, and Valtrex which is very expensive to treat the symptoms and never cured me. I was browsing through the Internet searching for remedy on HERPES and i saw comment of people talking about how Dr Ehbota cured them. when i contacted him he gave me hope and send a Herbal medicine to me that i took for just 2 weeks and it seriously worked for me, my HERPES result came out negative. I am so happy as i am sharing this testimony. My advice to you all who thinks that there is no cure for herpes that is Not true just contact him and get cure from Dr Ebhota healing herbal cure of all kinds of sickness you may have like
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    ReplyDelete
  10. I am so Happy to be writing this article in here, i am here to explore
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    ReplyDelete
  11. i want to inform the public how i was cured of HERPES Simplex Virus by a Doctor called Dr.EBHOTA. i visited different hospital but they gave me list of drugs like Famvir, Zovirax, and Valtrex which is very expensive to treat the symptoms and never cured me. I was browsing through the Internet searching for remedy on HERPES and i saw comment of people talking about how Doctor EBHOTA cured them. I Was scared because i never believed in the Internet but i was convince to give him a try because i was having no hope of been cured of HERPES so i decided to contact him on his email, i searched his email on net and i saw a lot of people testifying about his goodness. when i contacted him he gave me hope and send a Herbal medicine to me that i took and it seriously worked for me, am a free person now without problem, my HERPES result came out negative. You can contact him on
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    ReplyDelete
  12. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of
    breast cancer and her name is Sandra David I and my family have taking her
    to all kind of hospital in USA still yet no good result. I decided to go to
    the internet and search for cancer cure so that was how I find a lady
    called peter Lizzy she was testifies to the world about the goodness of a
    herbal man who has the roots and herbs to cure all kind of disease and the
    herbal man email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister help to cure her breast cancer. I contacted him and told him
    my problem he told me that I should not worry that my sister cancer will be
    cure, he told me that there is a medicine that he is going to give me that
    I will cook it and give it to my sister to drink for one week, so I ask how
    can I receive the cure that I am in USA, he told me
    That I will pay for the delivery service. The courier service can
    transport it to me so he told me the amount I will pay, so my dad paid for
    the delivery fee. two days later I receive the cure from the courier
    service so I used it as the herbal man instructed me to, before the week
    complete my sister cancer was healed and it was like a dream to me not
    knowing that it was physical I and my family were very happy about the
    miracle of Doctor so my dad wanted to pay him 5 million us dollars the
    herbal man did not accept the offer from my dad, but I don't know why he
    didn't accept the offer, he only say that I should tell the world about him
    and his miracle he perform so am now here to tell the world about him if
    you or your relative is having any kind of disease that you can't get from
    the hospital please contact dr.sakuraspellalter@gmail.com or whats app him
    +2348110114739  you can follow him up on Instagram @herbalist_sakura for the cure, he will help you out with the
    problem. And if you need more information about the doctor you can mail me
    davidclara223@gmail.com 

    ReplyDelete
  13. This is really serious, who will believe that a herb can cure herpes, i never believe that this will work, i have spend a lot getting drugs from the hospital to keep me healthy, it got to a time that i was waiting for death to come because i was broke, one day i hard about this great man called Dr Azaka who is well know for Herpes, HIV and Cancer cure, i decided to email him I didn't believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepared a herbal medicine (CURE) and sent it through Online Courier Service for delivery, he gave my details to the Courier Office. they told me that 3-5 days I will receive the package and after receiving it, i took the medicine as prescribed by him at the end of the one week, he told me to go to the hospital for a check up, and i went, surprising, after the test the doctor confirm me Herpes simplex virus negative, i thought it was a joke, i went to other hospital and was also negative, thank you for saving my life, I promise I will always testify of your good works. if you are herpes simplex virus patient, OR you are be helping by someone before i will like to advice you to give this man a tryand see what will happen to your life don't worry about the money you have being using contact him and I am sure you, you will get cured, WhatsApp him on +2349059389105 or email via drazakaojezele@gmail.com Dr Azaka IS ALSO SPECIALISED ON(1) CANCER,(2) DIABETES,(3) HIV&AIDS,(4) URINARY TRACT INFECTION,(5) FIBROID,(6) IMPOTENCE,(7) BARENESS/INFERTILITY,(8) PREGNANCY,

    ReplyDelete
  14. Hello everyone, I have been infected with HSV 1&2 which I contacted from my partner since 3 yrs with a lot of outbreak and different symptoms which almost cost me my life. One day I came across one herbalist online who I contacted through mails and phone calls, but it cost me some money and now I'm cured. A big thanks to God and Dr.Nicolas and you can reach him on drnicolasherbelhome@gmail.com

    ReplyDelete
  15. My name is Giovanni, am feeling so much better now after Dr. Raymond healed me of corona virus with the help of a spell. it really hurt to have lost my mother and wife to this virus before meeting this great healer, i am so happy to have survive this deadly virus. A friend of mine Lee from China told me how this great Dr. Raymond healed two of his Daughter with a spell, so I decided to contact him immediately for help. I did as he instructed and now am healed completely. What a magnificent experience with Dr Raymond. I will not stop sharing these testimonies until each patients recovered. Thanks to the great Dr. Raymond for restoring my health. Contact him via: Email> swiftspellcast@gmail.com WhatsApp> +2348118116281
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    ReplyDelete
  16. Hello Everyone out there,I am here to give my testimony about a Herbalist doctor who helped me . I was infected with HERPES VIRUS in 2012, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. One day I was in the river side thinking where I can go to get solution. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor who uses herbal medication to cure HERPES VIRUS and gave me his email, so i mail him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the HERPES VIRUS that was in my body got vanished . so if you are also heart broken and also need a help, you can also email him at {dradigba@gmail.com} or whatsapp him number: +2348077875210.Contact him today and you will have a testimony…Good luck!... DOCTOR ADIGBA CAN AS WELL CURE THE FOLLOWING DISEASE:-1. HIV/AIDS2. HERPES3. CANCER4. ALS5. Hepatitis6 Diabetes7 LOVE SPELL8 IF YOU NEED YOUR EX LOVER BACK TO LOVE YOU AGAIN.     

    ReplyDelete
  17. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of breast cancer and her name is Sandra David I and my family have taking her to all kind of hospital in USA still yet no good result. I decided to search for cancer cure so that was how I found a lady called Peter Lizzy. She was testifying  to the world about the goodness of a herbal man who has the roots and herbs to cure all kinds of disease and the herbal man's email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister's help to cure her breast cancer. I contacted him and told him my problem he told me that I should not worry that my sister cancer will be cure, he told me that there is a medicine that he is going to give me that I will cook it and give it to my sister to drink for one week, so I ask how can I receive the cure that I am in USA, he told me That I will pay for the delivery service. The courier service can transport it to me so he told me the amount I will pay, so my dad paid for the delivery fee. two days later I receive the cure from the courier service so I used it as the herbal man instructed me to, before the week complete my sister cancer was healed and it was like a dream to me not knowing that it was physical I and my family were very happy about the miracle of Doctor so my dad wanted to pay him 5 million us dollars the herbal man did not accept the offer from my dad, but I don't know why he didn't accept the offer, he only say that I should tell the world about him and his miracle he perform so am now here to tell the world about him if you or your relative is having any kind of disease that you can't get from the hospital please contact dr.sakuraspellalter@gmail.com or whats app him +2348110114739  you can follow him up on Instagram @herbalist_sakura for the cure, he will help you out with the problem. And if you need more information about the doctor you can mail me  or whatsApp  davidclara223@gmail.com +1(440)359-4106  

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  18. I was in severe ribs and stomach pain at about this time last year. And I went to the hospital for treatment and was diagnosed for CHRONIC HEPATITIS B I was told it has no cure and i was so devastated because all hope seems to be lost, some drugs was given me to slowdown the viral load, and it got worse after sometime. I came across Dr. Iyabiye’s recommendation online while studying about the disease, and then I reach out to him just to try but I was taken by surprise. I got completely cured, all the pains were gone and I went back to the hospital for another test and I was tested negative to the disease. Here is the doctor’s contact if interested: iyabiyehealinghome@gmail.com (+234-815-857-7300)

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  19. I’m here to testify about what Dr. Omola did for me. I have been suffering from (GENITAL HERPES VIRUS) disease for the past 3 years and had constant pain and inching, especially in my private part. During the first year, I had faith in God that i would be cured someday.This disease started circulating all over my body and I have been taking treatment from my doctor, few weeks ago I came across a testimony of Mary on the internet testifying about a Man called Dr. Omola on how he cured her from 5 years HSV 2. And she also gave the email address of this man, advise anybody to contact him for help on any kind of diseases that he would be of help, so I emailed him telling him about my (HSV 2) he told me not to worry that I was going to be cured!! Well, I never doubted him I have faith he can cure me too,, Dr. Omola prepared and sent me Healing Oil, Soap, roots and herbs which I took. In the first one week, I started experiencing changes all over me, after four weeks of using his Roots/ Herbs, Oil and Soap, I was totally cured. no more inching , pain on me anymore as Dr. Omola assured me. After some time I went to my doctor to do another test behold the result came out negative. So friends my advise is if you have such disease or know anyone who suffers from it or any other disease like HPV, HBV, ALS, HBP, CANCER etc. you can contact Dr. Omola for help via dr.omolaherbalhome@gmail.com or whatsapp +2348118116254.

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