Open Letter: Please Don’t Try to “Cure” My Child with Autism

No More Nice Mom about my Child with Autism (all three of them!)

No More Autism Cures Please

Loving a Child with Autism: Autism is Not my Child, but it is a part of who they are.

My child with autism – all three of them – are amazing. Talk with most autism parents – there’s nothing more personal to a parent than talking about their child, and if they have a child with autism that’s even more true.

Sometimes, though, well-meaning folks don’t stop to think before they pass along something ‘wonderful’ that they have read. And if you have a child with autism, let’s just be honest here – life’s rough enough without being hit in the face every day with how other people think you should do better for your child.

The other day I received a message on Facebook from a friend about someone’s newest way to “recover their child” from Autism. I’d say I receive a Facebook message or email, even sometimes find these sentiments in face to face conversation, at least once per week.


But …
So here’s the thing. I’m a nice person. I like to keep the balance, look at things from all sides of the coin, be unbiased about one new treatment or another.

But, when it comes to our children, please don’t be the next person trying to tell me how to cure or recover my child with autism, any of the three of them.

I’m done playing peacemaker, and finished playing nice.

What Autism Is, from One Special Needs Parent

Autism is a neurological disorder of the brain. WebMD says it is “…a brain disorder that often makes it hard to communicate with and relate to others. With autism, the different areas of the brain fail to work together.”

To me, beyond the diagnosis, autism is part of the fabric that makes up this family. It allows one child to ask insistent questions about the world around him and never have enough answers. It allows another to work at least twice as hard as others to fit in with his classmates, even after overcoming all obstacles academically. And it allows one to finally … finally … be finding his voice in a unique and hopeful way at eight years old.

Our boys are autistic, it is part of who they are. Autism has colored all their memories of this world, the people they’ve met, and the people they have yet to meet.

But it’s part of who they are. I could no less take autism away from Bobby than I could dim his amazing smile. I couldn’t strip autism from the equation with Logan any more than I could stop him from giggling at the world around him. And I couldn’t pull autism from Andy any more than I could take his earnestness and goofy playing voices.

Autism is a part of who my children are. The very unique and amazing little men they are becoming.

Yes, sometimes autism is like a disease that takes our children’s ability to communicate, to deal with the world around them.

But that’s life. Autism is a part of that life. It’s a part of them.

What Autism is Not, at least According to this Special Needs Parent

Sometimes you have to look at the world a little differently to see how amazing children with autism are.Autism is NOT a disease like some cold. And the only treatment scientifically proven to help children diagnosed autistic is not a cure or even a type of recovery – it’s therapy and hard work, and sometimes emotionally scarring for the child to go through (according to some autistics who’ve written about it).

Autism is NOT a death sentence, and does NOT have to mean a child can’t function in society.

Autism is NOT an evil entity that devours our children, no matter how frustrated and angry the symptoms of autism can sometimes make us as we try to help our children.

Autism is NOT my child, but it IS a part of who they are. You can’t cure or recover a child who sees their world differently.

Sometimes, you have to look at the world a little differently to see how amazing children with autism are.

Your Turn: I realize not everyone will agree with me about how I view my children’s autism. I’d love to hear from you, regardless of whether you agree with my thoughts or not. I only ask the conversation remains respectful.

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://katscafe.org Jim Moody

    I have never agreed more with anything in my life. Just hearing someone offer “a cure” makes me want to puke. Tell me, why hasn’t the AMA, FDA, or any other organization been told about this? BECAUSE IT’S NOT TRUE!!!!!!!!!! Every child on the spectrum is different. Hell, I’m different and I found out I was on the spectrum 5 years ago. Just like that scumbag, Joe Scarborough, (he pretty much said all people on the spectrum were mass murderers and got away with it) people who say this are just…. Okay I’ll stop before I say anything else, I could go on forever. /end rant

    • http://katscafe.org Katrina Moody

      I know, Jim – thanks so much for your support. {{hugs}}

    • http://www.becausetheychoseus.blogspot.com Christine

      Thank you, thank you….I get so upset with reading or listening to parents say “little Tommy needs a cure.” How are we suppose to educate others if we can’t even educate ourselves!! I am so happy you wrote this and I’ve posted it on my Facebook page. I’ve lost a few friends because of this very topic. My children are autistic human beings..end of story!! Again, thank you!!
      Christine

      • http://katscafe.org Katrina Moody

        Christine, it bothers me to a different degree when I see other parents talk about their child needing a cure. It’s hard for me to judge another parent, though, because sometimes we deal with this diagnosis in different ways, and for some parents a cure is part of how they are dealing with it. While I don’t agree, I respect their right to feel that way …

        That said, I’m so pleased you found that this post helped you, and thanks for spreading it around a bit for me, I really appreciate that! Sometimes we have to be the ones to stand up and speak up for how we feel about being special needs parents – otherwise folks might think we all feel like our kids are a burden, need to be cured … and for us that couldn’t be farther from the truth. {hugs} Thanks again Christine!

  • http://www.cendrinemarrouat.com Cendrine Marrouat

    I quote you: “Autism is NOT a death sentence, and does NOT have to mean a child can’t function in society.” – Einstein is a perfect example of what a person with autism can truly achieve.

    The fact that people with autism cannot communicate like “normal” people do, does not make them less worthy of our love. Quite the contrary!

    I am very proud of you for writing this letter, and think more parents need to do the same.

    It’s time people stopped trying to cure others. They need to start looking at themselves in the mirror of life instead.

    Hugs!

    • http://katscafe.org Katrina Moody

      Thanks Cendrine! For the support and the encouragement to write this post. You and Jim helped me step forward on this one. And I so agree…people need to be willing to put their ideas of “normal” aside and start embracing a world where a person’s worth isn’t judged by the way they view the world.

      • http://www.cendrinemarrouat.com Cendrine Marrouat

        You are welcome, my dear!

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  • Natalie

    The onset of autism, a bio-neurological disability that affects the way an individual reacts to their environment and others, is usually recognized and diagnosed in the first 3 years of life. Programs designed to treat autism in children through behavior modification, medication and diet, have been very successful in recent years.

    • http://katscafe.org Katrina Moody

      Natalie – that is my very point. All of the programs and treatment you mention are just that, a way to treat some of the symptoms of autism, not a cure or even a system of recovery. Every child with autism is different from another. To suggest that because they have a diagnosis of autism they are diseased, that they need to recover from a kind of illness … I guess I just see that as disrespectful to the amount of work that goes into countering some of the symptoms of autism.

    • http://katscafe.org Jim Moody

      Which is not a “cure”. All of those options have been used by the boys doctors, therapists, Katrina, and myself. No two Autistics are the same. Treatments are out there but anyone saying they can “cure” my boys by some “new age treatment” don’t have a clue what they’re talking about. If more of these people would just research first before they offer their non-medical opinion then it wouldn’t upset us as much because they would see what they are doing…

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  • http://specialmomspace.com Michelle

    I think because autism is some what unknown to many people, they in a well meaning way are trying to help. Of course, it can be frustrating but do you think they are being malicious? Otherwise, I wouldn’t let it bother me as much. Of course, my son isn’t autistic (but my niece is). He has multiple other special needs but I think what keeps me balanced with unsolicited “help” is knowing that people mean well. At least most.

    • http://katscafe.org Katrina Moody

      That would be why I held my tongue for so long, Michelle – I know that most people are very well-meaning. They aren’t sharing something they’ve read to be malicious. But how will folks without a personal understanding of autism understand these things if we brush them under the rug all the time? That’s why I finally decided to speak up.

      While I wasn’t (I don’t think) mean or disrespectful in addressing this issue, I don’t think that those on the outside of the diagnosis understand unless someone explains to them another viewpoint. This is my explanation, you know?

      Thanks so much for dropping by to comment Michelle! I hope everything is going okay with your son? I’ll have to hop over to your blog to catch up!

      • http://specialmomspace.com Michelle

        I think it’s good to educate people on autism. I don’t understand it very well myself and my niece is autistic.

        Everything is good over in my neck of the woods :-) CJ is doing really good too. No seizures in over a month!

  • http://autismum.com/ Autismum

    Great post and absolutely how I feel about my little man.

    • http://katscafe.org Katrina Moody

      Thanks! They’re awesome little guys!

  • angela Wandursky

    I agree so whole heartily I couldn’t imagine life with out autism! my mike touches everyone he meets and knows every one loves everyone and they love him!! Not a day goes by that we are somewhere and someone stops and says hi! Nor is there a day goes by that he don’t stop to say hi to a teacher ,classmate,neighbor or friend,! We live on one of the roughest streets in are area and there isn’t a time that they don’t see him out playing stop and say hi and how has it been! we literly live in the “hood” so to speak! My son went to school in a regular school with regular peers! From the time he was in 6 grade the year after we moved to are county made up off rural and suburban nebior hoods he went to school made friends and went through school to 12 grade were he went to school and graduated with 90%of these kids he has known since 6th grade! When my son name was called on that rainy stormy day of the graduating class of 2012 outside in the pouring rain THE WHOLE SENIOR CLASS ALONG WITH MOST OF THE BLEACHERS STOOD UP AND YELLED WAY TO GO MIKE YAAAAAAA WHOOHOO YOU GO BOY! and there is how autism has effected my son! SO WOULD I CHANGE IT? NO! I THINK NOT! but would i have changed it when he was young I might of thought of it buy not know after seeing how terrific he is!!

    • http://katscafe.org Katrina Moody

      I absolutely love this story! It is so wonderful to hear from a mom who’s gone further down the road, you know? My guys are all surprising us daily – and they’re awesome little guys each with their own unique challenges. I hope one day, when they graduate, it will be the other students cheering them on as well!

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  • http://whenwilltheytakeanap.blogspot.com/ Anansison

    I posted this on lostandtired.com

    This reminds me of the book “The Speed of Dark” by Elizabeth Moon. It’s about a proposed cure for autism and whether or not the main character wants to participate in the cure. There are concerns about by “removing” his autism then he would be a completely different person.

    I’m not sure if you would want to cure autism or alleviate some of the difficulties since it’s a fundamental part of the person. If there is a cure it would be best applied to those who have not learned how to cope with their sensory or communication issues. But then you should also consider the other aspects of a cure; what would happen for someone who has multiple diagnoses? Would those things be cured as well, or would curing one part exacerbate the others? What kind of psychological therapy would a person need? Imagine someone with a dual diagnosis of Autism and Conduct Disorder; if you cure the autism, will that also cure the Conduct Disorder? Will that person be so used to behaving in a certain way that s/he would continue with the conduct problems, even if they were related to the autism? What about someone who is diagnosed with IDD and autism?

    • http://katscafe.org Katrina Moody

      I get what you’re saying, and I’ve wondered that myself. In our case our boys have multiple additional diagnoses, all of them (including the autism) is likely caused at least in part by the same rare genetic disorder. In our boys’ cases, even if we took the autism away we would still have so many of their other diagnoses to deal with that I struggle to figure out how different taking away the autism might be.

      But taking away the autism means taking away something else fundamental in who our boys are.

  • http://fromtheretohere.net John Makin

    I am an Aspie, it is very much who I am and I would not change it.
    A cure is not possible for those who have it as it comprises a different brain development.
    Genetic engineering may be possible in the future, as it may be possible to eliminate blue eyes.
    I am 100% no cure.
    Having said that, it is all very well to disparage those who discuss it, or think of it as a disease or deformity, but there are many for whom the effects – or symptoms they would say – are more than they can cope with. That can depend on the severity of the Autism or their development and the care and support they have had with accommodating those differences.
    Many will never agree that it is something they should be happy to suffer; and I do mean suffer, for, for them, that is how it affects them.

    So while I am very much dismissive of the very idea that there could be a cure, I am wholeheartedly in support of those who want treatment and support in finding ways to cope with the problems that it undoubtedly brings them.

    This issue is by no means black and white.

    I wear spectacles. I do not feel that it is a deformity that needs to be cured but a difficulty that needs correction to enable me to cope with it.

    • http://katscafe.org Katrina Moody

      John – I appreciate your well-thought-out response. This line struck me:

      So while I am very much dismissive of the very idea that there could be a cure, I am wholeheartedly in support of those who want treatment and support in finding ways to cope with the problems that it undoubtedly brings them.

      I, too, am 100% in support of those who want to help their children with autism. I understand the desire for a cure, but I guess I view a cure as something different than therapy and hard work … my guys have all undergone years of therapy and will likely continue that for a while to come, but for me, the idea of a cure says that there is something inherently and deeply wrong with them. Treatment can help them overcome many of their symptoms (hopefully), and they worked hard to get to the level of independence they have.

      I also agree that this can’t be a black and white issue – every parent (and autistic adult, for that matter) needs to determine how they feel about it – I don’t know their story, their pain, their triumphs.

      Thanks so much for commenting, John!

  • http://Mychairsrock.com Lisa Little

    Your letter echos how I secretly feel inside but fail to portray without becoming so over emotional I’m just shouting inside….. Please stop she’s my daughter, not evil, not weird, not bad….just a little girl who is growing in mind and body differently to other children. I’d say the worst culprit is family! Family daily tell me, she’s not right, I’ve read this about autism, I’ve seen this on the news, it cures autism! Aaaaaaggggghhhhh shut up! Is what I’m screaming inside, but it never comes out. : (

    • http://katscafe.org Katrina Moody

      Lisa – I’d say you just put it quite well. Sometimes, it’s the ones closest to us that wound us the most deeply when they are trying to help. {{hugs}}

  • http://foraoisdarach.blogspot.com/ Petra

    Thank you for this letter. I hope you don’t mind if I share it.

    I think that many people who offering ‘us’ different cures for “Autism” don’t understand that we are able to accept our children for what they are and that Autism is a big part of them. My seeing is that they don’t understand, we don’t have an ‘issue’ with Autism, but unfortunately we are pushed into an ‘issue’ with the society and the systems (doesn’t matter from which country we are from) that have problems with different ways of view.
    And by my opininon; a big part of Autism is… seeing the world from different perspective…

    • http://katscafe.org Katrina Moody

      I published it with the hope that my words would resonate with someone, and I’m blown away by the comments. By all means, please feel free to share!

      And Petra, I do think that a large part of this is that it’s so hard for others to understand what they don’t have to live. But in the process of trying to be helpful, to show support … they have stopped thinking about what we want and need. What helps one parent or child isn’t always the same thing that will help another.

      I couldn’t agree with your last line more – a very big part of Autism is being able to see the world from a different perspective!

  • http://www.mylifewithmonkeys.com/ Kellee Conrad

    This is such a wonderful statement you have made. Way to stand up – and yes, you were respectful enough while making your point – but you needed to make that point! I do not have children with autism, but I grew up with a younger brother who did. It was very difficult because it was much less understood then and we certainly did not have the patience or tools needed to be more successful. He is now in his thirties and lives on social security disability, but in his own apartment in a group home. As a family we feel blessed that there has been a solution for him because he’s maturing at a much slower pace. Sometimes I believe the gifts I received learning and growing from my brother were greater than any other. What a big challenge you have – your boys have been entrusted in your care and they could not be luckier to have parents that will support them and love them like you do. Best of luck to you.

    • http://katscafe.org Katrina Moody

      Thanks so much for your heartfelt comment Kellee. I’ve spoken with other siblings of adults with autism before and many feel that they were gifted with the chance to learn about life through their sibling with autism’s eyes. How wonderful for you to feel that way, and for your brother to have your love and support. He is blessed.

      While it was a long time coming and hard to write, I think it was very important for me to put this out there. I’m humbled by the comments as others stumble on the post and find it resonates with them.

      Have a great week and thanks again, Kellee!

  • Heather Chute

    Hi Katrina,
    It’s interesting so many people meet my son after not seeing him for a few years and ask “is he cured?”. I reply “no, he is growing, maturing and learning everyday”. I have been very fortunate that a wide array of therapies have added to my son’s already amazing talents and abilities.

    I would miss so much about what Evan’s autism has brought to us. A new view of life, a different way to listen and communicate and especially the lyrics and words to so many movies.

    Good for you for loving your children the way every parent should. No strings attached!

    • http://katscafe.org Katrina Moody

      Heather … I know we see so much progress sometimes and I have fielded similar comments, especially about Andy, who has made the most progress.

      Thanks for your comment and for visiting the Cafe!

  • http://www.whynotfathers.com Carl Young (

    I think that if Autism can be cured, then the child probably didn’t have it to begin with.

    Sure Autism isn’t the greatest diagnosis, but it isn’t the end of the world either. Autism is responsible for their academic abilities. Autism is responsible for their artistic abilities. Autism is responsible for their twisted sense of humor. Autism is a lot of things, but it isn’t a death sentence.

    • http://www.whynotfathers.com Carl Young (

      Some days, I feel like pulling out my hair. How do I find the energy to make it through tomorrow when today is kicking me hard?

  • Michael Feir

    Hello Katrina. Your open letter strikes a chord with me. People tend to have a harder time when it comes to valuing each other’s differences and unique perceptions. I’m totally blind and have been so all my life. People presume that I simply ought to be cured. Blindness certainly is a disability. There’s no real getting around that. I often have far less data about a given circumstance than my sighted fellows. I can’t read body language to determine whether or not I’d be welcome in a conversation. I’m far more prone to disorientation and can’t do any of the various jobs requiring good orientation and driving. On the other hand, blindness has made me pay greater attention to words and descriptions. It has made me appreciate the incalculable value of a good story well told. It has made me take time to form judgements about other people as I’m unable to jump to conclusions based on appearances. It has forced me to become a more patient man than I otherwise might have been.

    Like you with your sons’ Autism, I don’t see my blindness as being the major problem. Far more often, it’s the attitudes and ignorance of others which can bar me from more fully engaging with life. People just don’t want to take the time to get to know my true capabilities or know me as a person. They’ll tie their tongues into knots trying to avoid saying anything offensive to me. Yet, turning someone willing to help into someone willing to date, be friends or hire me is like pulling teeth.

    I’m a man of faith and can’t help but cringe whenever someone else feels the need to pray for the sight I’ve never had nor particularly missed to be restored to me. I cringe for fear that their faith might suffer when said sight fails to materialize. God doesn’t need to restore my sight. All I pray for is that I, with my gifts and talents, continue to find ways of sharing them with society at large. I still hope and pray that somehow, society will learn to better accommodate and use my different capabilities and perspectives rather than setting them aside. Some of us just aren’t going to live so-called “normal” lives. That’s not God’s fault or problem. That’s the operation of chance as part of his plan. It takes years to really come to terms with that and appreciate the advantages. Because I’ve been unable to find employment, I’ve had the time, patience and reserves of fortitude to be there when people have needed a patient ear. There are plenty of ways one can do extraordinary kinds of good even at the margins of society. I’ve always kept looking for opportunities and have been fortunate to have met some remarkable friends along the way. I hope that your three sons are similarly blessed as they grow older.

    Sadly, I don’t believe that societal prejudices and attitudes shaped over thousands of years are going to be changed on a large scale within my lifetime. Your sons and I will certainly have our victories if and when people take that precious time for a more thorough look at our lives. Over time, with patience, we can gently educate them. I know how frustrating that can be. Trust me. There are days when I simply haven’t felt up to being the patient ambassador from the land of darkness that I aspire to be. However, I know that my efforts have allowed other blind people to go a little farther than they otherwise might have. I’ve also managed to inspire people with sight to question their assumptions about the differences of others and their consequences.

    My parents had to go through similar frustration about peoples’ attitudes as they raised me. They had to teach me to keep a healthy perspective and recognize good intentions in people who unwittingly said hurtful things. They also had to teach me to put my foot down and advocate for things when peoples’ objections and fears were unreasonable. Much as my parents did, I hope that you, as their parent, help people come to know and value your sons as your letter clearly shows you do. I deeply sympathize with how hard that can often be and wish you God’s blessings and the very best of good fortune in your efforts.

    Yours sincerely:
    Michael Feir

    • http://katscafe.org Katrina Moody

      Michael –

      Wow – as two of my guys are legally blind (they both have different levels of functional vision, but they do it, and I know that is different than total blindness) I really found your comment both heartfelt and inspiring on several levels. This paragraph really affected me:

      Like you with your sons’ Autism, I don’t see my blindness as being the major problem. Far more often, it’s the attitudes and ignorance of others which can bar me from more fully engaging with life. People just don’t want to take the time to get to know my true capabilities or know me as a person. They’ll tie their tongues into knots trying to avoid saying anything offensive to me. Yet, turning someone willing to help into someone willing to date, be friends or hire me is like pulling teeth.

      I think this comparison is very apt. In the same way that being blind can effect your senses and ability to experience the world, autism can also effect the senses and ability to experience the world in a typical way. Being able to see past the supposed disability, no matter how disabling that might be (or not be), is a societal problem that will take far longer to change. As society’s ideas on disability undergo a shift, though, I think discussions like this are an imperative part of that step forward. Much like you so eloquently stated:

      Sadly, I don’t believe that societal prejudices and attitudes shaped over thousands of years are going to be changed on a large scale within my lifetime. Your sons and I will certainly have our victories if and when people take that precious time for a more thorough look at our lives. Over time, with patience, we can gently educate them.

      Like you, when faith enters the equation, I often cringe. I’m a faithful woman, a devout Christian, and we’ve frequently asked for prayers as the boys go through one medical issue or another. I always felt that my children are a part of God’s plan. His will isn’t always carried out by performing miracles, sometimes it’s in the living of a faithful life. And sometime’s, I think, it just helps to shift your ideas of what a miracle truly is.

      I can only pray that I am the parent who can teach her children to self-advocate and understand others as well as yours have obviously done for you.

      Thanks again for a thought-provoking comment, Micheal.

      -Kat

  • Natalie

    Make them to become you family…They need to establish there everyday routine that he count every day your autistic child will respond to this confusion with bizarre behaviors.

  • http://SpectrumMentor.com Brian R. King

    Beautiful Katrina. Your thoughts mirror my own in reference to myself, my three boys and the role the spectrum plays in our lives. Our unique lens on the world makes us assets to those who take the time to understand our unique approach to life.

    That is of course when we take the time to understand theirs as well. You and I know others who make the decision that autism is a thing that invaded their child and needs to be eradicated. I used to argue with them and try to convince them that the autism was part of their child, I used to until I realized I was playing the same convincing game I was upset with them for playing on me.

    Now I simply realize that we each create the story we need to live our lives as fully as possible. The Warrior Moms create a story of a crusade on behalf of their child in which they’re always fighting the bad guy/corporation that did this to their child.

    Then there are the parents who decide that the lens of autism is part of the diversity of humanity and agree to walk that journey with their child, with their own sense of wonder and discovery. Others are at different points in between.

    None of these stories are right or wrong, the true measure of their value is where they get you. Do they increase or decrease happiness and progress?

    I for one have the perspective that my boys were born with their own unique pattern of strengths and challenges that some have labeled autism. A pattern that makes them unique and worthy human beings, capable of love, growth and contribution. Even though the journey to get them there may be more difficult at times. But then again, that’s just my story. Thank you for writing this Katrina and for allowing us to share our thoughts.

  • Stacey S. Way

    Oh how I love thee!
    I too come across this subject a good once a week, sometimes more. I do not understand why people fear Autism… Fear anything that is different from themselves. I think back of the days where we were once called a “Refrigerator Mother”. Even back then, they tried to fix different… Look at John F. Kennedy’s (Rosemary Kennedy)sister. Her parents sought a cure, lobotomy. It also amazes me too how I can hear two things in one sentence. “I want a cure because I don’t want to see he /she struggle, and MY LIFE WOULD BE SO MUCH EASIER”. I think it is sad, what people say and do, and I just have to listen…. because if I speak up…. all hell breaks loose. For all the above reasons, and reasons not listed is why I do not like Autism Speaks. Thanks for the vent!

  • Stephani

    I find it difficult to walk the line between encouraging parents to look for ways to help their child vs. calling it a cure. On the one hand, while it’s not a cure, therapy and interventions can mean the world of difference to our kids. It can feel like one if the difference is big enough.

    You may be interested in this post I wrote last March: http://nourishingjourney.com/index.php/autism-adhd-and-diet-is-it-a-cure/

    I would love to hear your thoughts! :)

    • http://katscafe.org Katrina Moody

      Stephani –

      I can understand what you’re saying. I guess I just see a distinction between curing something that isn’t a disease and a child being helped through hard work and therapy. One is a passive experience while the other an interactive one.

      We believe pretty strongly in diet helping our guys here – and I do know families who have seen such a difference with dietary intervention that their symptoms improved drastically. But, if you have an underlying medical condition and it is treated (insensitivity to casein or gluten; intolerance for food dyes) then you have to re-evaluate if the symptoms were the result of that inflammation within the body or because of autism. In some cases, I think either could be true.

  • http://www.Mazzastick.com Justin Mazza

    Hi Katrina,
    I don’t view autism as a disease or defect either. It’s just another way for a child to interact with their world and environment. I still believe that people need to be educated more about autism and learn to appreciate all the gifts that an autistic child will bring to this world. :)

    • http://katscafe.org Katrina Moody

      Justin – I couldn’t agree with you more. I think the difficult thing is helping others see that understanding and awareness, as well as acceptance, should be the norm for those with autism (children and adults).

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  • http://myjordanrules.blogspot.com Leticia

    Hi there. I made a comment on another site and I don’t know if it was seen. I understand whole-heartedly your letter and would not condemn you for feeling the way that you feel. I am a mother of an autistic boy who is now 8. I have spent many hours researching autism to better help my son “recover”. Firstly autism is a problem within the immune, nervous and gastrointestinal systems. So while autism is not life threating to our kids, it’s not healthy for them either. My son has been seeing a DAN(defeat autism now) Dr. since he was 4 or 5 and because of it he speaks, can read where before he saw her he could not. Although he is non-verbal, he can communicate and can be taught to communicate whenever there is something he doesn’t understand. My son has been tested for metals and at one point had a high level of tin. He had a lot of can sodas around that time and his body holds onto so many toxins that it comes into contact with which isn’t good for him. I’m not saying that my son will be cured, but he gets better with each treatment that is given and I won’t give up hope that it will all work out. I have a go-to book that you may want to check out, Healing the 4-A Epidemics by Kenneth Bock. It may give you a little inside into how things are seen from a DAN doctors prespective. If not, hope you take no offense to my information. Your sons are blessed to have you. Take care.

    • http://katscafe.org Katrina Moody

      Leticia –

      Thanks for commenting. I firmly believe that some instances of autism can be treated by addressing immune, nervous and gastrointestinal system health. In fact, I think dietary changes have helped our children immensely. But just as I think every child with autism is different, I think that there are many different reasons for the diagnosis.

      I think it is wonderful that you have found a type of treatment that is helping your son. I would never take offense to what another parent has to say about their child or what is helping their child.

      I think in the scope of this comment, it would be hard to fully explain why I don’t believe this is the primary issue with our children, but we know that their underlying genetic disorder has contributed to their varying diagnoses. As such, we’ve spent years in therapy with our boys and they have all made the kind of progress that amazes doctors and helps us keep looking for them to meet their potential. More than meet their potential.

      Thanks again for commenting and I hope to see you back again at the Cafe. –Kat

      • http://myjordanrules.blogspot.com Leticia

        Understood. I love the info you are giving me!! Take care.

  • http://www.TriciaBallad.com Tricia Ballad

    I just found your website after someone shared this post on Facebook, and I’m glad I did! A lifetime ago, when I was pregnant with my first child, I remember discussing my hopes and dreams for that child with my husband, and one of the things I was terrified of was having a child with autism. I could handle a child with a physical disability, but one that affected their minds? That I thought I could never handle. Ten years later, I can’t imagine parenting a child without autism….maybe because I’ve never had to do it! When I meet parents of newly diagnosed children, I simply tell them that their child didn’t “catch” autism. It’s always been there, and it will always color how their children view the world – just as their education, socio-economic status, and birth order will color how they view their world. It’s just another layer to their personalities.

    I’ll admit though, sometimes I drive past the kids waiting at the bus stop and my heart clenches. I wish my life could be so easy, that I could just send my kids out the door at 7:30 and move on to other things. But that’s life. Sometimes we choose the harder path, sometimes it chooses us, and we do the best we can with the knowledge and resources we have.

    • http://katscafe.org Katrina Moody

      Tricia –

      I am sorry for the delay – I thought I had responded to your comment – maybe WordPress ate it! I remember my fears with my first pregnancy, the hopes … and with each subsequent child I was faced with the same idea … do I wish for the so-called “normal” child? I think how you worded that last paragraph says it all:

      I’ll admit though, sometimes I drive past the kids waiting at the bus stop and my heart clenches. I wish my life could be so easy, that I could just send my kids out the door at 7:30 and move on to other things. But that’s life. Sometimes we choose the harder path, sometimes it chooses us, and we do the best we can with the knowledge and resources we have.

      Eloquently stated, and agreed – we do the best we can, and if we know better, we do better.

  • Anna

    I have high functioning autism and the cure autism crowd is a pestilence to the world. I have heard of something that cures autism, but the recipient of the treatment might die. I don’t want a normal life. I like my autistic life just fine. Why does God put such things on the Earth? He wanted to instill faith in us, for us to have understanding and patience. I eat gluten and caseins and I’m in the resource program at my mainstream school. I have a nonverbal friend. I would not cure him if I could. If I could say a prayer to get rid of my PDD NOS, I would not say the prayer.The truth is, I would rather die than be neurotypical.

    • http://katscafe.org Katrina Moody

      Thanks for commenting Anna – I believe that God blesses us with our boys, and while sometimes I hate how autism affects their ability to communicate, I love my guys and everything that makes them “them” – I’m grateful to hear from someone with autism who feels their autism is a gift. Good for you to be such a strong self-advocate, and knowing yourself!

  • http://www.aboutabugg.com Renee

    What a beautiful post Katrina! I was recently asked if I could ‘take it away’ would I? Ummm, no.

    Like you – it’s a part of who she is – but she is so so very much more… For the good and the not so good.

    • http://katscafe.org Katrina Moody

      Absolutely, Renee! I know the folks who say that kind of thing just don’t get it, but it still hurts – when I think of my guys and how awesome they are I can’t imagine anyone who doesn’t feel the same.

  • http://www.mom-blog.com Gina Badalaty

    Hi Katrina! This is an interesting topic to me, and I would like to respectfully disagree with some of what you say. When Zoe was first diagnosed years ago, I agreed with you, but many stories, friends, and actual experimentation has changed my mind. Firstly, I don’t like to say “cure” autism. I don’t think of it as a disease, personally, and I FIRMLY believe that children and people who have disabilities or autism should be accepted into society – and I’ve been finding out the painful way that this is not the case. Next, autism has so many varieties and manifestations in its appearance that to say any one thing can cure a majority of behavioral, social, sensory or learning issues is beyond a stretch, it’s just not practical.

    That said, while I get what WebMD and mainstream Western medicine is saying about the “causes” of autism, I definitely thinking there is a growing scientific and medical community that has shown me that biochemistry plays a large role in how the brain processes and functions, and in causing different attributes of autism. Rather than say “cure”, let’s just say that in our daughter’s case, removing this food or that toxin, or adding a certain supplement has had a significant change on her performance in school, her behavior, her socialization, and her sleep patterns. She still has autism, and it still hinders her in social situations, her speech, her learning, her senses, but less so than when we started on this journey. It’s still important to me that people accept her as she is – I have no guarantee that her behavior can ever become better than this, but I continue to hope, continue to test biomedically, continue to make changes to her food, her exposure to chemicals, and her supplementation. FWIW, I also have a daughter with Down syndrome, and while that can never be altered, we have also seen marked improvements with these same changes.

    I hope I have not offended you in any way. I think as parents we all need to do what’s best, and I think the medical community will be undergoing a revolution in the next few years as to what really causes autism and changes that can be made to help our kids. That’s the bottom line, really – helping them be the best they can be.

    • http://katscafe.org Katrina Moody

      Gina –

      I think we agree on more than we disagree on. I would even go as far as to say that I even think biochemistry can play a big part in helping to treat the symptoms of autism in some cases. In the same way nutrition, food intolerances, and other factors can help as well (I firmly believe switching over to a whole foods diet has helped my guys in many ways.)

      My largest problem leading to this post is the idea by others that every “cure” or “treatment” touted on the internet has to be passed on. I get so tired of everything being touted as a cure when I don’t think it can be a cure in that sense … perhaps a valid treatment option, but not a cure.

      I think it’s great that you have found something that works, and that gives you hope, and I am not offended at all by your sharing that. I do think that there are lots of different contributing factors, and lots of different ways to treat those factors. And I’m also sure that greater understanding will come in upcoming years. :-)

      • http://www.mom-blog.com Gina Badalaty

        Thanks Katrina! And I’m glad to hear that…you are right, as well.

        In fact, all those “cures” are overwhelming (and that goes for the behavioral ones too) and you are left feeling guilty that you can’t do or try them all (no one can). I asked our DAN! doctor about one, and he gave me a great explanation: The varieties in what’s happening to cause autism inside the child means that a therapy or treatment may work on a child. So that parent champions it, and next thing you know, it’s a great money-making venture for someone, with some results for some patients. Worth a try, just in case your kid responds, or snake oil sales? I always think it depends on the price- and some are astronomical, taking advantage of desperate parents.

        Yea, guess we do agree more than I thought! peace out, gina

  • http://www.autismspectrumconnection.com Alicia Hendley

    Thanks so much for sharing! I agree completely–beautifully written. Here is my similar views, in case you’d like to read: http://www.autismspectrumconnection.com/blogs/spotlightblog/themilliondollarquestion

    • http://katscafe.org Katrina Moody

      Alicia – I’m waiting for my membership to be confirmed so I can’t comment there – but LOVELY post on your thoughts on the subject! Beautifully written as well!

  • shelley

    just to point out to anyone who might flame me down……..i have PDD- NOS and i don’t think it has affected me badly, granted i had to start from the botton to get to where i am now, because the special needs unit i was once in said i wouldn’t cope with GCSE’s, so i had to work from entry level to get to where i am now. of the NT people think they are so better, why are they the ones resorting to violence and petty backstabbing? granted some autistic people do commit crimes, but it’s the NT lot that have no moral compass, and no one has suggested that they should be cured? NO! why should i fit in with their pointless desire for perfection? i’m perfect as i am and if we had a society full of physically and mentally perfect people who act like sheep, it would be a stepford – esqe dystopia as there would be no diversity!

    sorry it was a long rant……