I Do Not Want To Cure My Special Needs Kid

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia.

As a parent of a special needs kid, I encourage questions about autism and our experience. I welcome any opportunity to dispel autism myths. But there’s one question that simply makes me cringe.

“Do you hope there will be a cure for autism?”

It’s a heavy question. It’s one of those questions where if you ask ten different parents, you’ll get ten different answers. And it’s not the kind of question that parents can answer with a simple yes or no.

Last month, the FDA approved a groundbreaking “clinical trial to assess the use of a child’s own cord blood stem cells to treat select patients with autism.”

And when a friend sent me this article, I knew she was excited to share the news “about the possible cure for autism” by the number of exclamation points. I didn’t have the heart to respond.

Because when I think of cure, I think of disease, of sickness. I don’t think of Norrin as being sick. And I don’t think of autism as a disease in need of cure. When I think of disease, I think of suffering and pain. My son Norrin with his dimpled cheeks, his infectious laughter, his sweet disposition, his eagerness and willingness to learn – suffers from nothing.

When I think of the contributions to society made by Autism Heroes – Lewis Carroll, Albert Einstein, Andy Warhol, Sir Isaac Newton, Temple Grandin and so many others – why would anyone want to cure autism? And with all the of debates surrounding cause, cure and prevention of autism, I wonder – where would we be without autism? I’m not so sure a cure is the answer.

Autism needs intensive therapies, specialized programs, specific methodologies to meet the unique needs of each child and adult. Autism needs patience. Acceptance. Unconditional love. Hope. Respect. Compassion.

Diseases need to be cured.  Autism needs to be understood and accepted.

We need to understand that life doesn’t always run on an exact timeline. Not every achievement or milestone needs to happen for every person at the same time.  We need to accept autistics for all that they can do, rather than for what they can’t. We need to understand that different is not always a bad thing.  Different doesn’t need to be feared or cured.  And different should never be laughed at.

Norrin is my only child, I do not know what it’s like to have a child without autism. I love him – just as he is. Autism adds to his personality, it doesn’t diminish it.

Raising a child with autism isn’t easy. As a mom, it’s hard – not always understanding the needs and wants of your own child. There are times when I call his name three, four, five times – asking him to look at me. When he’s running around, back and forth, flapping his hands and I can’t get him to calm down or focus. When he’s not using his words but mumbling, scripting to himself and I’m not sure why. When it’s late at night and I’m up thinking about his goals and IEP. I still don’t want to cure Norrin of anything. All I want to do is work harder to help him and to understand him.

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  1. by Jim W.

    On September 12, 2012 at 9:19 am

    Awwww. . . great post. Makes me think of my little Lily.

  2. by Diane

    On September 12, 2012 at 10:28 am

    Such a great post Lisa!

  3. by Helena

    On September 12, 2012 at 10:41 am

    You’ve said it best. There is nothing to cure. This touched me deeply, because I strongly agree with it.
    ” Norrin is my only child, I do not know what it’s like to have a child without autism. I love him – just as he is. Autism adds to his personality, it doesn’t diminish it.”
    Thank you Lisa. Big hug!

  4. by Niksmom

    On September 12, 2012 at 12:08 pm

    It’s such a hard issue no matter how you slice it. I love my son as he is, but I sure would like to take away his physical and communication challenges, for sure!

  5. by Kim

    On September 12, 2012 at 1:19 pm

    I felt the same about my daughter with downs,but i know my mother felt the opposite about my brother with MD. I think the difference there is MD will eventually kill him, literally. It is terminal. Downs and autism are not. And he would kill to be able to walk, my princess was happy just the way she was.

  6. by Monique

    On September 12, 2012 at 2:47 pm

    He’s so lucky to have a mom who loves him as much as you do! xoxo

  7. by Ruby

    On September 12, 2012 at 4:47 pm

    I can’t even imagine what i would say if someone ever told me that about my child like if they had a disease. It’s insane the things people can say. I admire you amiga You know this I’ve said it before! I agree with Monique Norrin is lucky to have a mama like you UNCONDITIONAL LOVE AT ITS BEST!

  8. by MizKp

    On September 12, 2012 at 8:16 pm

    Thanks for writing this post. It came at the right time. I can totally relate to how you feel. I love my son unconditionally.

  9. by Paula Bendfeldt-Diaz

    On September 12, 2012 at 9:11 pm

    Thank you for this wonderful post. I couldn’t agree more. I too, cringe when someone asks me that question. Both my kids are on the autism spectrum and I would not change them, they are truly special and unique and Autism is part of that.

  10. by Presley's Pantry

    On September 13, 2012 at 10:38 am

    I know exactly what you mean. Max is my only child and I only know his childhood not hose of others. I do not compare my son to other people’s milestones…. I just try and help him achieve what’s best for him! Bravo to you LISA!!!!!! xoxoxoxo

  11. [...] This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.  [...]

  12. by Susan

    On September 14, 2012 at 9:20 am

    This is a nice posting and this mom is right on track with how she feels about her child. Acceptance helps the childs self esteem and his ability to progress to his full ability. However this is not the attitude the medical community needs to foster because the diagnosis of autism is pandemic and will tax both society’s ability to absorb this rising number of adults with severe functional deficits. Schools are asked to handle more children every year with “special needs” while the average child is pushed to the side. Unfortunately many of these children will never “carry their weight in society and Mom will not live forever. The fact that Lisa has 1 child and can focus all of her talent and resources on this child is the exception not the rule. Many parents presenting with with children with Autism in psychiatric settings are pushing their family’s resources, patience and time to the limit, unable to work due to frequent calls from schools to come and pick up the child for outbursts of anxiety and aggression. So its ok to love and accept your child, it is not ok to ignore a massive healthcare crisis facing our country.

  13. by Sara

    On September 16, 2012 at 4:41 pm

    The only thing I disagree with is the assumption that the Autistic Heroes wouldn’t have accomplished the same things if they didn’t have autism. Of course we’ll never know, but I’d assume they’d have the same intellectual abilities whether autistic or not.

  14. by Kristi

    On September 16, 2012 at 4:59 pm

    I agree with Susan. Of course parents should love and accept their children as they are; however, Susan makes a good point stating these children will never pull their weight in society and mom will not live forever (I am sure she is referring to those with moderate to severe autism). These children will grow up unable to fit into society, a workplace, relationship, etc. That is suffering and deserves looking for a cure. One woman’s experience with an only child, as mentioned, is not the norm.

  15. by Lexi

    On September 17, 2012 at 1:58 pm

    Wait, WHAT?! “these kids will never pull their weight in society” and “these children will grow up unable to fit into society, a workplace, a relationship, etc”?!

    That is just so completely ignorant that it makes my head spin. God forbid you have a child with special needs. God forbid that anything happens to you in your fairy tale life that would challenge your assumption that someone who can’t do the same thing as you is LESS THAN YOU. That these people’s worth are dependent on what they CONTRIBUTE in a monetary way to society.

    So you’re saying that we SHOULD NOT give them extra attention at school to help them have the best chance at life as possible? Then what? Just lock them away? Then what? It makes no sense to not provide for children with special needs because you don’t think they will ever be able to contribute. Without those services, there would be LESS of a chance of them contributing in your stupid way to society. And to say they are TAKING from your kids in school is also so off base. Funding for special programs comes from a completely different place than funding for “regular” kids in school.

    I have heard this argument too many times before. Someone used it when they told me I should have aborted my child who has Down syndrome. Because she won’t give as much as she takes. It’s wrong. IT’S WRONG.

    People with autism (I have a son with autism as well) and with other special needs DO contribute to society. They DO have a place in society. Just because you see them as less than you from your throne does not mean that they are worthy of every opportunity that a regular child has.

  16. by Irma

    On September 17, 2012 at 3:37 pm

    Lexi,

    I’m sure Susan and Kristy don’t think that one kid is worth more that another. But they’re not pointing out just their opinion, but facts. Mom is not going to be there for ever, US is not the only country in the world, autism is everywhere in countries with less resources for schools and special therapies and attention for kids and adult in the moderate to severe part of the spectrum. Would it be bad to hope for a cure then? while you ask for understanding and patience for your special kid hundreds and thousands are treated like retarded and like animals in the third world. Ask a mother in Chad or in deep India what would she like: a cure or that her country provides her with the resources (educational and therapy) for her kid, while she takes care (or tries) of her other 4 children. GO ASK HER!! come ask me.

    I have a child with autism. Yes. She won’t be able to take care of herself in the future, not without someone around her 24/7. I have 2 other children (twins). Should I demand that they take care of their sister when I die? is it fair for them? If a treatment becomes available, trust me, I would like that treatment for my her. Why? because I can’t ask the society to establish special measures and resources for my kid if a cure becomes available. Is not fair for the rest.

  17. by Flannery

    On September 18, 2012 at 8:39 pm

    In several cultures, many, many years ago, an infant with obvious disabilities was often either sacrificed or left in the wilderness for dead. This was done for practical reasons, because the ability of the tribe or clan depended on being healthy and able-bodied, and a disabled infant could not possibly grow into a contributing member, but would need constant care.

    Living in our modern world, in a country full of wealth and resources, it puts my mind at ease to see that our attitudes toward the differently abled has progressed with the times, and is STILL progressing. The fact that we afford those individuals the support and respect they deserve as part of our world, part of the human race, says volumes more about us as human beings than what Susan, Kristi, and Irma have to say.

  18. by Irma

    On September 19, 2012 at 4:16 pm

    Don’t take me wrong Flannery. The US has the wealth and the resources (?) to “care” for their autistic kids. But moms like me, who speak the inconvenient and non politically correct truth always find this kind of walls.

    I don’t think my daughter doesn’t deserve caring from society because she can’t contribute as much as others. Oh no! I’m just saying that even though she deserves it it wouldn’t be fair that if a cure becomes available I refuse it because I like here just the way she is, because then I can’t demand that society keeps spending resources on her just because I want when there are other kids in need with other non-treatable problems.

    See what I mean? I don’t think is illogical to think about it like that. Right now 1 in 88 kids are diagnosed… this number is HUGE people. HUGE! for any condition or disability. No matter how mild. Stop calling it diversity. There’s nothing diverse about a good quantity of cases.

    What are we going to do IF this numbers reach lets say 1 in 50? that 2 in 100, what about 10 in 100? Just say no to thanks to a cure? because I want to? Let us forget about society, let’s think personally about the kids. Don’t you want them to do stuff with their lives? to have an easier time integrating? not to suffer? do you preffer to educate an entire society… no.. an entire world instead of curing your child?

    That doesn’t make any sense.

    yeah, I sound harsh but truth is harsh. We moms won’t be around forever, our other children didn’t ask to care for their autistic sibling, who am I to deny my kid a cure if that improves her life quality and my other children life as well?

    I just don’t get it!

    Sorry Lisa, I know you only have one child, and his case is probably not as severe as my daughter’s (11), but I’m speaking for the moms who are in a more complicated situation and would take a cure as a blessing from God.

  19. by Artsieaspie

    On September 21, 2012 at 1:01 am

    It’s refreshing to hear a neurotypical Mum saying what people with autism have been saying for years – that we don’t want to be cured.

    And for Krisi, Susan, and others who are worried my existence and that of people like me is a drain on your precious resources: I was a special needs kid. My folks despaired of me. Now I’m living independently, earning good money and paying the taxes that support society’s less fortunate. (And some neurotypical deadbeats.)

    Who are you (the general ‘you’, not any individual poster) to decide which child will or won’t grow up into a contributing member of society?

  20. by adkyriolexy

    On September 22, 2012 at 11:49 am

    Autistic people face severe and disturbing degrees of discrimination in schools, workplaces, and other settings. As a result of this, autistic people are disproportionately unemployed, thus a “drain” on social services. However, to use the consequences of institutional discrimination against us as justification for eliminating us is a particularly cruel sort of twisted logic.

    If you are really concerned about the financial “drain” of unemployed autistics, look at the reasons for their unemployment. The vast majority of autistic people have skills that could translate into paid work, so why don’t they? What are the barriers to autistic employment and economic success, and how can those barriers be lifted?

  21. by Rainbow Goddess

    On September 22, 2012 at 1:12 pm

    I wonder if we can meet halfway between “cure” and “stay the same.” I don’t think autistic people need to be cured. I think that specific symptoms and difficulties need to be addressed and treated without taking away the special “something” that makes a person autistic. When symptoms that make it hard for a person to function are treated, that makes the person more capable. When children with autism spectrum disorders are diagnosed, treated and educated early, that gives them a much better chance of growing up into capable and functioning people.

    My autism wasn’t diagnosed until I was an adult. I spent ten years on welfare, spent time in a mental hospital, lived in a converted laundry room and had no friends. Eventually I found a program that, while it was not specifically designed for autistic people, helped me learn proper communication skills and social skills, the correct way to address people when speaking to them, the importance of eye contact, how to hold a conversation rather than a monologue, etc., and then helped me to find a job.

    I started out with part-time jobs and minimum wage, moved on into higher-paying jobs, had some setbacks, but eventually found the right job for me that pays well, where I am respected, where I have made friends. It just took longer for me than it does for most people. If my autism had been diagnosed and treated earlier, I might not have had to spend that those years living in poverty in a converted laundry room.

  22. by Rebecca McBroom

    On October 8, 2012 at 5:26 pm

    I loved this article. My granddaughter, Emory, has autism and I feel the same way. She is the most beautiful child in the world. Each day with her is like a new adventure. She too runs around flapping her little butterfly arms and reciting things she hears from tv or that she gets from who knows where? But she is quite remarkable, and I would not want her to be any different. Yes, I would like to understand her a little more… and I am working on that. I only wish that her teachers would be more accepting of her and realize she will never be like the other children. In some ways, I am so glad. I hope that no one ever makes fun of her or laughs at her, but if they do I don’t think she will really care. That is part of her beauty. It will hurt me much more than her. My little wonder could care less about what others are doing or saying. She is in Emory’s world and it works for her.

  23. by L.G.

    On October 15, 2012 at 2:57 pm

    Yes, it is very tough dealing with friends’ and family’s assumption that we long for a cure. I appreciate your article, it put many of my feelings into words.