Why “Curing” Autism is a Ridiculous Headline

Curing Autism isn’t Realistic, Silly!

Curing Autism is kind of silly - since Autism isn't a disease! I wrote the following article a while back, then re-edited it after we watched the sensationalist news report from a local television station – talking about the newest possible cure for autism. Curing Autism … really?

I couldn’t help becoming angry … but I know that my point of view isn’t always the popular one. We have 3 boys with autism, one of whom is mostly nonverbal. We understand the hope that talk of a “cure” brings.

But it’s a false hope.

Why? Well, I encourage you to read on and see my reasoning. The point? Is that my boys are pretty darn amazing – they try my patience and sometimes having three on the spectrum is more than a little overwhelming.

But they wouldn’t be MY boys without their autism. It’s part of who they are. Also, autism isn’t a freakin’ disease, thank you very much. You cure disease, you treat neurological disorders and love the child who works their ass off to make progress. To imply that you can “cure” autism is to imply that our children are disease-ridden and in need of curing, that they aren’t amazing little guys all on their own – autism included.

And I refuse to do that.

Autism isn’t a Disease, People!

Our local news is all excited about a potential “new cure” for autism! It seems, *gasp*, that children who have intense behavioral therapy can be “cured” from their autism.

To this I have one response – I laugh.

First, this is hardly news – studies have been around for years talking about the importance of early therapy and the extreme difference it can make for some children on the spectrum.

Let’s be geeky about this for a minute, shall we?

A cure, or recovery even, connotes a type of healing that one would have from a disease, not a neurological, sometimes-genetically-based and scientifically proven disorder which is not in any way a disease. (the researcher in me is quick to point out that certainly some neurological diseases surely do exist which can do this, but autism does not)

As the mother to three boys who happen to have ASD, with proven genetic and neurological basis, anyone throwing around words which imply that autism can simply be cured isn’t someone (or a news station) I can have a whole lot of respect for.

While many awesome, marvelous children have made great progress in their therapy and have gained the needed social, emotional, and cognitive skills to appear supposedly “cured,” these are children, and adults, who have been profoundly changed by something about themselves which is fundamentally different from *some* other people.

The child with autism who has gone through intense therapy isn’t a child who is miraculously cured. Therapy isn’t a cure – it’s hard work. Not only that, but you can’t “cure” the neurologic basis for autism, only help address the symptoms of the disorder. To call years worth of therapy and hard work on behalf of the child, parents and therapists a cure is to disrespect the amount of work they all went through.

The autism disorder doesn’t go away because someone learns how to act in public, learns how to communicate, and learns how to relate to the people around them. They will always have to make adjustments in their routines, in their mind, for the thought processes that neuro-typical folks have without the same level of work.

I’m not autistic, I only have three boys and a husband on the spectrum – to think that the years of therapy and work our boys have gone through could be reduced to a “cure” is ridiculous — I can’t accept that. I won’t. My boys are autistic. They are awesome just the way they are.

They just happen to be one of millions of children who have worked for years to improve in small and steady ways instead of extreme ones. Don’t discount these children, who make up a far larger number of those on the spectrum, just because the thought of a “cure” is making news headlines. Again.

I’d love your thoughts about this – because I will NEVER say my children with autism need to be cured, that they are somehow less because they happen to be autistic. You?

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
  • http://www.cendrinemarrouat.com Cendrine Marrouat

    Great article, Katrina!

    I think the problem is that people tend to confuse the words “disease” and “disorder”. They are two different things.

    I don’t believe in labels. I think we just use them to make ourselves feel good. People with autism are among the most intelligent in the world — and history. Of course, they may not communicate in the same way as you and I do, but if you really pay attention, you will see real beauty. They make you humble because you have to learn to be more compassionate and loving. This, in itself, is a gift.

    People need to stop discounting others because they are a little different. Actually, being normal is boring. I think mediocrity should be fined. ;-)

    • http://katscafe.org Katrina Moody

      I couldn’t agree with you more Cendrine! Labels are a necessary but inane part of our existence – without them we can’t get the help we need for our boys, but with them others automatically think less of our boys.

      We’ve always thought that our guys find ways to communicate that go beyond language in the traditional sense. You just have to look a little harder at what they are saying. Of course, that’s not to say that I wouldn’t love for Logan to have more actual vocabulary *grin*

      Of course, I’ve always love the saying that “Normal is just a dryer setting” :-) Thanks so much for your comment Cendrine!

  • http://assistsocialmedia.com Elizabeth Maness

    Oh my a cure LOL Well most people don’t understand it’s a brain disorder. I love that I because so interested it it autism and meet you! I have learned so much about it! I do know cure will not happen but treatment that’s always nice..;)

    • http://katscafe.org Katrina Moody

      Treatment is nice and important for sure, Liz – our guys have made amazing strides because of it! But it’s so frustrating to see folks talk about a cure as if my guys (or any child with autism for that matter!) are diseased just because their brain works differently.

      I want the world for my boys. I want them to be able to communicate and fit in with this world that sometimes seems so overwhelming. But at the end of the day I NEVER want that to happen at the cost of them being appreciated for the amazingly awesome little guys that they are!

      Thanks so much for commenting Liz!

  • Sheena White

    This was a great post and definitely brings up a great point. I don’t think people generally mean to be incensitive, they just are, as Cendrine posted, mistaking a “disorder” for a “disease.” But you’re right, their disorder is part of who they are and while it certainly brings its own set of challenges, it isn’t something they need to be “cured” of. Very moving article…

    • http://katscafe.org Katrina Moody

      Thanks so much Sheena – I don’t think most people mean to be insensitive at all – but unfortunately misspeaking, especially as a news agency, means mis-representing what autism is, as well as what the reality is for families who are still fighting in the trenches to help their child(ren) with autism.

      I really appreciate your comment!

  • http://www.key-dynamics.com Jackie Harder

    Very informative, Kat. A similar debate goes on among the deaf, some of whom believe cochlear implants are admitting that there’s something “wrong” with being deaf. I appreciate your take on this topic…and thanks for sharing.

    • http://katscafe.org Katrina Moody

      Thank you for commenting Jackie! When the boys were younger, and before Logan was a blip on the radar, I had a friend with a daughter who was profoundly deaf. Maybe my relationship with her and her experiences within the deaf culture and community colored our experiences a bit.

      Additionally, as Bobby and Logan are both legally blind (not the same thing as totally blind by any means) we have been able to experience the blind community’s response to this issue as well, which is reminiscent of the deaf community — obviously it’s not about an implant in this case but with the understanding that being blind doesn’t mean being less.

      I really appreciate you taking the time to comment!

  • http://canceremotionalwellbeing.com Niki Barr, PhD

    Excellent post! So true, All of It! Thank you!

  • http://www.MissingSecretToParenting.com denny hagel

    Excellent and necessary article! Having raised 2 ADHD children I know first hand the importance of understanding the difference between disease and disorder! Thanks for sharing your wisdom!

    • http://katscafe.org Katrina Moody

      Thanks for stopping by Denny – it’s amazing how hung up I can get on the distinction between the two, but that’s one of my pet peeves. My guys have worked so hard to make every bit of progress that I hate to discount it. I also think that the distinction is important for newly-diagnosed parents to understand – when you’re looking at “cures” and “therapies” and this book or that one and struggling to understand how you can best help your child, it is easy to feel disheartened or downright depressed because your own child isn’t making the kind of progress you see on TV or in some book … it’s easy to fall into feelings of inadequacy as a result. I hate for parents new to any diagnosis to fall into that trap.

  • http://www.kimgarst.com Kim Garst

    Great job spelling it out Katrina! I see the time (and money) you and so many others spend on your children. I have to say kudos to all of you parents who embrace this daily. I know you do what you have to do and you don’t know any other but still you are raising pretty amazing kids!

    • http://katscafe.org Katrina Moody

      Thanks Kim! I think the greatest travesty are the parents who aren’t able to spend thousands of dollars on specialized treatment for their child’s autism who feel like failures because they have heard about “this cure” or that one. It makes me so sad for them!

      You’re right – we do what we have to do and life goes on … but you are dead on – my guys are pretty awesome *grin*

      Thanks for stopping by Kim!

  • http://onthewebbsocialmedia.com Shelley Webb

    While I agree with you that autism is a disorder not a disease, I’m going to bring a different perspective. It may be a disease that caused the disorder. We don’t know that yet.

    My brother has severe cerebral palsy and while it IS a disorder, we have only recently determined that it was caused by a disease called homocysteinurea which made the vessels in his brain very brittle before birth thus causing a bleed.

    So maybe, just maybe, there may be a cure for those who are not born yet.

    • http://katscafe.org Katrina Moody

      I think this is a very valid point, Shelley. But I would still say there’s a distinction.

      In your brother’s case, the disease caused the damage to his brain which in turn created the symptom of cerebral palsy. In our Logan’s case, it wasn’t disease but a brain bleed that caused damage to his brain which worsened the symptoms of his autism, epilepsy and cerebral palsy. But those other diagnoses now stand on their own. They aren’t the disease, they are the symptom.

      Heck, in all our boys’ cases, it was the rare disorder they have known as Axenfeld-Rieger Syndrome that made their neurological development different, which led to the inherent increased likelihood of autism and epilepsy. The rare disorder was the cause, but each of these things are symptoms of that disorder.

      Maybe I’m splitting hairs. I think the connotation of autism being a “disease” is just hard for me to work around in this case.

      In any case I agree, that when there is underlying disease a cure is not only a possibility but a welcome one. That might prevent autism occurring as a result, but still wouldn’t be a cure for autism. I think it’s an important point though.

      Thanks so much for commenting Shelley! Great food for thought!

  • http://www.edmundslee.com Edmund Lee

    From what I can see, your kids are darn lucky to have you as a mother! … And your husband is lucky to have you as a wife =)

    • http://katscafe.org Katrina Moody

      That’s sweet to say Edmund – thanks so much! I’ll have to direct my husband to this comment *grin*

  • http://www.anitafiander.com Anita

    Excellent post Katrina. Thanks for sharing so the world understands a little more. Kudos to you, such an inspiration!

    • http://katscafe.org Katrina Moody

      Aw thanks so much Anita! I’m just like any other mother – I love my guys and thing everyone else should love them just the same! :-) Thanks for stopping by!

  • http://www.graceapp.com/ LisaMaree

    Drives me nuts. I’m very pro evidence based interventions but the word ‘cure’ implies indistinguishability which I think A) raises unreasonable expectations causing some parents to push ABA too hard
    B) underestimates how hard the learner has to work on acting in a way that comes “naturally” for others

    And C) makes the world boring!

    Acceptance of autism shouldn’t mean giving up on evidence based interventions, but neither should it mean scrubbing away all the signs and quirks and talents that the autistic brain is capable of.

    Yep, being indistinguishable could save you being bullied, but how about we get the rest of the population to be more accepting?

    We did it for women, it is now possible for us to vote, work and be seen outside rollerskating through fountains in white jeans DURING our periods!! Without being stoned to death.

    We did it for black people, we let them get paid for a day’s work and vote AND be elected to high office!!

    Why can’t we now learn to be inclusive of quirkiness and compensate for challenges so the Autistic community don’t always have to choose between ‘acting normal’ and being included.

    Vive LE difference xx

    • http://katscafe.org Katrina Moody

      Absolutely agree with you Lisa! We must move past the idea that different is wrong … different can be amazing and awesome! It’s one thing to help those with autism learn how to better be a part of the world, but the world still needs to accept them!

      I am all for real interventions, but can’t stand the idea of stripping away all that makes my boys the amazing guys that they are. :-)

  • http://none Melissa Randa

    While I believe there is no cure as well, I also know in my case early intervention helped my child to speak. Thus reducing the “wonderful autism tantrums” Does he still have Autism? Absolutely, he always will…just like his dad, my husband. Who has Asperger and is very successful in his career. My son has classic autism, he only spoke 3 words at almost 4. He still isn’t a talker, will never be, but I believe early intervention helped him in that area. Sensory Issues, and just having Autism will never go away…I cant imagine him any other way..he is an enormous blessing in my life. I honestly feel he has taught me more about LIFE, people, compassion for humanity..judging a book by its cover, OH NO! The people I have met on this journey, I would never know about. Its really been a life lesson for me and my family in the beauty of simple things, and the greater good in humanity…

    • http://katscafe.org Katrina Moody

      Early intervention has meant the difference for my boys in amazing ways — from speaking to walking and more. I, too, feel like my guys have taught me more about life than anything else. We never take anything for granted around here – we know how hard every smile is to work for!

  • Claire

    Great article and one I totally agree with. I’m also Mum to 3 children on the autistic spectrum and ive watched and supported them over the years to develop skills which N T children acquire naturally.
    It’s been a rollercoaster ride to say the least and tougher at times than I could ever have imagined but I genuinely wouldn’t have ‘cured’ them even if it was possible! My children were born perfect and different…. Not less or faulty.

  • http://review3.com Christopher James

    This is so true. Thanks for posting this..