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Have You Been Carly’d Recently?

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Carly Fleischmann is an amazing young autistic woman who has gained notoriety for achieving a “breakthrough” in her “severe autism”, learning how to communicate by typing on a computer.

Most of us have already heard of Carly. We make it our business to keep up with autism news stories. And make no mistake, Carly IS amazing. It’s just that…she’s also possibly an anomaly.

When people see Carly’s story on 20/20, they are inspired. They’re inspired because people don’t expect someone with severe autism to be cognitively equal to non-autistic peers. It’s the truth. When we see someone that can’t communicate, can’t control their body movements, and their behavior is challenging, we just can’t imagine that their thoughts and feelings could mirror our own.

The challenge with someone like Carly is two-fold. First, it brings our bias and prejudice about autism into stark outline – we don’t believe that autistics are equal to non-autistic people. When we are shown a legitimate example of someone learning and overcoming their challenges so their voice is heard, we are amazed and awed by this wondrous achievement. It’s as though we didn’t believe the possibility existed that she was a whole person with her own thoughts.

On the flip-side we have another problem, and that is with people generalizing Carly’s achievements to anyone and everyone they know who is autistic. Just about everyone I know has been “Carly’d” at some point, which means that some friend or family member was compelled to share Carly’s story with them, because “maybe it will work for your child too”. (I did not make up this term.)

Carly has become our very own Lady of Lourdes. I fully expect to see her image on a piece of toast, or embedded in someone’s granite counter top.

While everyone has their own unique potential, not everyone will have the breakthrough that Carly did. The big truth about autism that no one wants to talk about is that sometimes people do have autism AND cognitive delays. Sometimes those delays are significant, and a person can grow into adulthood and still have the cognitive ability of a child. So while Carly achieved success using assistive technology, others may not.

In short, we are supposed to presume competence and equality, while not necessarily expecting miraculous outcomes.

And THIS is a major stumbling block in the autism world, and especially between advocates and parents. Those that are active autism advocates will undoubtedly have a cognitive level that is at least close to “average”, while many parents are advocating for children that are significantly below the average, and unable to advocate or comprehend advocacy efforts.

According to an article on science20.com, about 40% of children with autism also have an intellectual disability. That translates to roughly 4 out of 10 people with autism have some degree of cognitive impairment. Now compare that to a study by Left Brain Right Brain, that shows an incidence of intellectual disability in the general population to be about 1%. Based on these studies, it is clear that there is a higher likelihood and prevalence of intellectual disability among autistics.

Carly is a role model. And while she does serve as a wonderful example to many, she also serves as an impossible standard to at least 4 out of 10 autistics.

And for me, that begs the question, how does the autism community effectively represent and advocate for people that may never achieve a degree of independence? Are the goals of advocacy in alignment with the needs of the entire community?

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

57 responses »

  1. This is why I heart you! It’s so true. I admire Carly and I’ve read her book but she is one girl. And while she’s inspiring, not all of our kids will grow up to be like her. Not every child can grow up to be their own advocate – how do we make sure those kids get the services they need? That’s what keeps me up at night.

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  2. ive been carly’d quite early on in our autism journey (we have two toddlers on the severely end of the scale) and at first, i didnt believe it. i truly didnt, it was not possible. then i started to think well, if it is possible its not something my child can do.

    my strangest response was one of sadness. i looked at my children and thought to myself..what if you are locked in there? what if you are looking out at my, this “normal” child trapped inside the autism like carly? it made me very distressed for many weeks.

    so in the end i decided not to measure my children to carly. what the acheive will be their own achievements and not based on what any one else with autism has accomplished.

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  3. This is so well said and I think really gets to the meat of why Carly is both an inspiration and yet so frustrating to parents of children with autism. Yes, her success reminds us to ask some very important questions about cognitive ability — but we also must remember that everyone is different. Everyone.

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  4. Yay for Carly – but don’t hold her up as the example of what can be. We do a similar thing with professional athletes as we fill kids’ heads with “you can be as good as (fill in your favorite star athlete’s name) if you practice (fill in the activity) more.”

    Anyway, though she appears (I’m still skeptical) to communicate through the computer, will she be able to live independently with her current behaviors? Will people give her chips to get her to type out her end of the conversation?

    Just call me cynical.

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    • Hey Kim — this is carly’s mom – -Carly types 100 % independently and I have not bought chips in a long long time!

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      • Hi Tammy, awesome for speaking out! Prompts such as chips and in our daughter’s case (Kinder eggs/balloons) are meant to be phased out with a good therapy protocol. Would ANY parent ever limit their child as to what/how they will learn and live? I’ve seen a lot of horrific behaviors out of independent livers of late so whether our daughter lives independently is pretty low on my radar. I am VERY grateful for Carly’s story w/family as I was able to teach oncologists how to talk to our daughter’s twin, also autistic, and treat her with dignity. Our other daughter didn’t make it but her life was not in vain. Take the lessons and info that YOUR family can extract and let God take care of the rest!

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      • Well said 🙂 Carly is amazing and a credit to all your hard work. You, your husband and your daughter are an inspiration to all.

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  5. true…
    and so complex is this autism world I get tired just thinking about it not talking about living it.
    severely affected children are often looked over by the media. As much as I love success I really would love everyone just getting what they need and small gains should be celebrated too.

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  6. You make a good point. I have been Carly’d on numerous occasions and to be honest I don’t generally read anything about her now. I do respect her and the many other advocates who are very cognitively able, however, my son is severely challenged and will never live independently. Just because the people on the higher end of the spectrum are able to advocate doesn’t mean that they can speak for my son. Unfortunately they don’t seem to realize this!!

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  7. I know I should LOVE her as the parent of an autistic child/child with autism – but I dislike her and the movement to canonize her as speaking for ALL autistics. It’s the same problem I have with high functioning autistics putting their opinion on everything autistic. My son is not like you. I do not share the same views. HE does not share the same views. So please quit speaking for ALL of us and keep it to your PERSONAL experiences and opinions.

    That is what the world needs to understand. These “Carlys” are sharing ONE opinion, one view, one experience – their OWN.

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  8. My three boys will achieve what they need and as for fitting in to the work horse never any rest or peace world I know it’s the workaholics are the really trapped the have a great spirit our boys and compared to some of their typically developed cousins I know my sons have a lot more peace in their heads phew !

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  9. Really good question, that last one. I wonder that, too. What ARE the goals of advocacy? Do they include everybody on the spectrum? Can one autistic person reasonably claim to represent all autistic people, even the ones who can’t speak for themselves?

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  10. You make some really, really good points here.

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  11. Carly? Who’s this Carly?

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  12. Great post and great questions to think about! My son who will be an “adult” next month would fall into the 4 out of 10 category. Your comment “…a person can grow into adulthood and still have the cognitive ability of a child” is so very true.

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  13. Honestly, the way I advocate is that every human has value, and we should treat them with respect, not pity. It is not my job to determine or interpret one’s personal, intrinsic value. As an advocate I must listen and observe, and advocate that everyone has the ability to live their own lives according to their own potentials. As advocates, it is up to us to support and accommodate to help make that possible. Not my place to determine what life has (more or less) value and what doesn’t, I try not to compare, judge, put anyone on a scale of more disabled or less, harder challenges or less, etc because it gets me stuck on the less part, which just isn’t helpful in my journey. I’ve never approached advocacy from just the autism perspective, but more from all disability, or even the entire human experience. I try REALLY hard (not always successful) to just stay out of the boxes. All of them. I have people tell about miracle therapies,etc and as long as what they’re talking about isn’t dangerous or otherwise harmful, I just smile and nod. Mmmmm hmmmmm. They’re in a different part of their journey. It’s OK. I guess to answer your question: We advocate for self-determination. It’s extremely difficult to do, as parents, but we listen, observe, interpret, make mistakes, learn. And we grow our kids the best we can to be who THEY want to be…even if they can’t tell us. And we support others in the disability community to achieve self-determination…that doesn’t mean we have to advocate what they want for themselves as individuals to be an ideal for the the entire community. I think restraint and seclusion….we can have a united front. It’s important. Whether to say autistic/autism or whatever? That’s like Black, African American. People of the community will never agree, so I don’t choose issue like that to advocate about. My kids can decide what they want to call themselves, if anything. (Self-determination) I’m rambling…so I’m probably not making any sense, lol.

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    • sophiestrains

      This raises very good points, as does the original post. I have been Carly’d already and it is just hard to figure out who is right or who is wrong (I am a very admitted newb, only a year into the journey). My head is swimming with all the arguments and I think everyone makes sense, in their own reality.
      What are my truths, at this point (and I know it might change): follow your child first, “experts” second. If your gut is sounding an alarm about something, proceed with caution. Have an open mind. Prepare to eat humble pie. Remember, your reality does not necessarily reflect anyone else’s.
      now, when can I expect the arrival of that “total guide to being the best autism parent in the world” manual? It seems it should’ve been here by now…

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      • I have autism an I don’t no what to think .i hope it true but sometime I wonder I try an talk to her on privet I’m at times she never reaspond back .i also have severe learing disabily It taken long time for me to become a hf person but never will I be as hf as her I grad at 22 with lots of help I never magicly got so good could go to reg school let alone collage .i still need help .im some what indapent .i have friends who are severe an can do something’s but will never be like her .i hope it not a hoexs but understand some parents qustuiong it I don’t understand the things she all ways write

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    • Actually, you made perfect sense. Saved me from trying to write that comment myself. I wanted a like or +1 button to click to endorse it!

      We are all aware that no one else’s experience exactly mirrors our own. So we need to be aware that no one else’s experience exactly mirrors those of other people too. Each of us has our own path in life – no one can “speak on behalf of all __fill-in-the-blank__” and actually represent that box. Because we all fit in multiple boxes ourselves.

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    • I echo someone else in what you said is so perfect & I wish I could’ve said it in some way too.
      As a parent of an Autistic child, I spend a lot of my time in conversations with other parents – some have very different lives than my family’s life, some have children with different needs, different skills, different likes & dislikes. Some have different approaches when it comes to therapy, diet, etc. – but even if I disagree slightly, I keep my mouth shut as long as what they’re saying/doing isn’t harmful in any way. I know they love their child & are doing the best they can. I know that every one of the parents I communicate with also want a world that is better for those with special needs, whether it’s in the classroom, at home, in the community, at the shopping mall – wherever.
      Carly’s story is a beautiful one – but I think one of the best things to gain from it is to just respect others with an ASD or any disability/different ability, same as you would anyone else. You can’t see inside others’ heads & hearts to know how they are really reacting, so you might as well just be respectful no matter what.

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  14. I’ve never bee Carly’d, but I have been Rainmaned. “What are your son’s special talents?” I was too nonplussed to answer, but in my imagination I answer that their special talent is that are socially aware enough to understand what you just asked. That or being class clown and local flirt.

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  15. I get Carly’d alot! Especially because my children are all over the spectrum. All I can do is do my best for them. Give them the opportunities that I can best provide and hope that they can find their voice through it. Heck, one of my sons doesn’t communicate via technology, he communicates via a Magna-Doodle! Who knew?

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  16. I’ve been Carly’d a couple of times that I recall, now I have a perfect post to share with the next person who does it to me.

    I love this post too for the more general message (and questions) about advocacy and about having realistic expectations of our children and autistic people.

    Thank you so much for writing this.

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  17. So well written

    I think I have also been hollanded a lot
    Still I think its okay when someone sends me – atleast they are trying to show some caring

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  18. The question is: how can you tell the difference?

    Suppose you have a child, a young child. Say, 4 years old. He cannot speak, or he has very limited speech. He may have little or know ability to use sign language, reading, or writing (but then, it’s quite common for 4 year old children not to have mastered reading and writing yet). There is no real way to test his IQ. He may be intellectually disabled. He may be average. He may be gifted. His intellectual abilities are largely unknown.

    Furthermore, IQ scores are ambiguous at best regarding neurotypical people, but they are even less reliable in the autistic population. Autistics tend to have wildly divergent focused abilities, so extrapolating an autistic person’s ability in one field from his ability in another, separate field is even less reliable than such extrapolations of a neurotypical person.

    And, of course, abilities fluctuate throughout one’s life. That someone has not mastered a skill by a certain age is no reason to presume that he can never master that skill in his life.

    So, yes, it is possible that our hypothetical 4 year old child who has not gained the ability to speak, read, or write is severely intellectually impaired to such a degree that he will never be able to gain these abilities. It’s possible. Certainly it is. But what reason is there to presume that this is the case? Why, when the matter is not yet resolved, should he be saddled with the limiting label of “Will Never”?

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    • I don’t think anyone is suggesting someone be labeled that way. The point is simply that not all autistics will have the same intellectual capability as someone like Carly. That to look at her as a standard isn’t realistic for every person.

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      • I don’t think “everyone” who hears of Carly sees her as a standard. In fact, I think many are intelligent enough to realize the limitations of that. However, she IS hope. She IS a breakthrough that is negating previous assumptions that non-verbal, severely autistic people cannot communicate, etc. Of course, it won’t work for all children, but as parents of ASD’s, it’s our job to reach out for ANYTHING that is possible to help them. Otherwise, we will just be in the darkness with them, always believing “they will never”. The point for me is to never give up or turn away anything that is possible. Your point about not all autistics having the same intellectual ability as Carly is very true. However, it came with an impression that Carly’s contribution to the Autistic world was being over-sensationalized. I think to some, that may have been offensive. The truth is, some parents DON’T want someone else’s achievement shoved in their face when their child’s abilities are not the same. With that comes a litany of feelings that are not anyone’s responsibility, including Carly. For some people, like me, she is a beacon of hope and a pillar of strength, especially having to stand in a storm of opinions that a typical person would likely run from! I respect EVERYONE’S opinions on this and am blessed to be compassionate enough to see many different viewpoints beyond my own. I empathize with parents whose struggles are deeper and greater than my own, while I applaud those whose successes surpass those of my daughter. The greatest tool that enables me to do that is to accept where my child is today while never giving up hope on her having a better tomorrow. Much easier said than done for many as ASD often wipes you out mentally, emotionally and physically.

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    • Carly is indeed awesome… but my understanding is that she was able to communicate before she learned to type. She used PECS, was able to communicate at least some of her wants/needs (choosing a snack, picking an outfit to wear to school, etc) even as a toddler, so she isn’t truly an “overnight” miracle.

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  19. This is Carly’s mother. Her SLP just sent me this blog post. Carly writes about her experience and view of the world. She never claims to speak for anybody else except herself. She is not one who has made her into a “verb” and objectified her in this way. I think we all subconsciously compare our kids and each other to other people all the time whether they have a disability or are accomplished athletes or artists or students etc. People started treating her like either the Dalai Lama or a total fraud right from the start. She has reacted to all that way better than I have and she really inspires me every day. And don’t think I still don’t yell at people who give her funny looks and stare at her — that happens all the time so I understand what it must feel for well meaning but ultimately uninformed people to compare our kids to one another. Carly is a person who wants to communicate to the world about what it is like to be her and so do hundreds of millions of all kinds of people all over the world on Facebook and CNN and Oprah etc. She is an 18 year old girl who has accomplished more than 99% of typical kids her age — she is not your daughter or your son or your neighbor or your student or your grandchild etc. and I am sorry that people are using her in this way. She is Carly and she is living her life just as we are all unique and doing our best each day.

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    • Thank you so much for commenting. I truly think your daughter is amazing. I’m sure it was never an intention for her story to be used in that way, it just happens. And that’s what my post is saying, she’s just one person, not everyone will have the same experience or breakthroughs as she has had. I think she is beautiful, and please know that this post is not a slight to her in any way.

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      • You are welcome and I realize you are not intending to slight her but the line about Lourdes and the toast really upset me. I have stayed off the radar for a long time now because Carly wants me minding my own business (what 18 year old doesn’t?) and because I find it so personally stressful (there is a reason why I haven’t written a book or you don’t see much of me in the media clips) but I had to respond this time because I have never heard of this practice before — Carlying someone — and that is cruel and unfair and makes me quite sick to my stomach. It is so sad how everything gets twisted around. I wish you all well…..

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        • I am sorry. It was truly meant with humor toward those that think Carly is a “miracle”. It’s not been an easy road for your family. I do hope you decide to write about it some day.

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        • Tammy,
          I’m sorry, I can see how using people using your daughter in this manner would be upsetting. It’s amazing to me how the internet can take something so intimate and so beautiful and twist it into something other than what it was intended to be. I’ve known Flannery for some time now, please know she meant no disrespect to you or your daughter.

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    • I want you to know that I am very inspired by your daugter, and if, anything, Carly confirmed what I have believed for so many years : all individuals with autism are intelligent,capable human beings who have the desire to achieve and can achieve if given the chance, even those who will never communicate verbally or through writing.Carly is proof that we should never assume anything less than this. Carly is an inspiration, and will motivate individuals with autism to feel good about themselves and the skin they’re in. Good job Carly-continue with your work. You are an inspiration and you should be very proud of yourself.

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    • Tammy, as my post stated below, I see your daughter as an icon of hope. She has proven what many have advocated for and believed: that autistic people not suffering from an intellectual disability as well, are able to communicate, feel and learn! Without adequate strategies to reach them, they would be essentially “stuck” within themselves. I cannot imagine the myriad of opinions and rollercoaster of feelings you must endure as Carly’s Mom. Just remember that she has a voice because YOU helped find a way to give her one without giving up. Now that she has her own voice, there will be people who have opinions that aren’t so nice. My wish for you is that you find strength from the many more voices who stand beside you and the hope that your child gives to other families of children with ASD. I would much rather learn of something that could possibly help my daughter, and have it fail, rather than never being able to try anything and have her secluded within her own world for her entire life. True strength comes from HOPE. Thank you, for being such an awesome Mom that Carly was able to lend me insight into what it’s like in her world!

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  20. I think it’s great that ordinary people are turned on to Carly’s remarkable achievements and believe that with the right help and support many people with autism can similarly be enabled to fulfil their potential. I think I’d rather have that reaction from the general public than an assumption that autism equals an intellectual disability. But then of course there is the important question ‘what’s wrong with having an intellectual disability anyway’?

    Thank you for a really good and thoughtful reaction to the Carly phenomenon.

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  21. I completely understand the responses about Carly not being a representative of all people with ASD and that to believe that she is, may give parents the false hope that their child will be able to one day communicate, after being “silenced” for so many years. However, as an educator, I would implore that what everyone takes away from Carly’s story is: people with autism are capable individuals who can see, hear and feel. All people with ASD have strengths and capabilities. All people with Autism want to be respected and feel good about themselves and others.

    Many individual with autism are not able to communicate verbally or through writing (as Carly does now). Unfortunately, many non-ASD people assume the worst or have very small expectations of those individuals, i.e.: “non-verbal people with ASD are mentally retarded and not capable of learning”.
    Working in the educational system for the past 13 years, I cannot emphasize how many times I have heard educators actually express this sentiment. One teacher blatantly stated that her job is not to teach children with ASD (as they are unreachable and “unteachable”) but rather to babysit them. Negative talk about children and in front of children occurs frequently. Systems meant to help students with ASD learn and navigate the world (visuals, schedules, quiet places or centers, communication devices, etc.) are not used, rarely used or used inconsistently. IEP goals are cut and paste year after year. Why? Because, many educators and service providers still believe that these systems are a momentary crutch for these students/children/people, who are just “not capable of learning” or “thriving”.

    So, my overall message is: when speaking or planning with educators and other providers, use Carly as a visual-reminder for them to have the highest expectations when it comes to your kids, and to always speak positively and respectfully to your child and in the presence of your child (as your child does understand every word that is being uttered to him and around him).
    Parents love their children beyond words and show that love and respect through their actions every minute of the day, every day. However, not all people treat children with the same and consistent love, compassion, respect and high expectations as you parents do. Therefore, for parents with children with ASD and are non-verbal and exhibit “high autism” characteristics-use Carly as reminder to all others, to never assume the worst, and to only expect the best.

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  22. Great I am now a verb! I have been called many things in my life Dumb, Stupid and un-capable. But a verb that people are using in a negative light. really!

    “The worst thing you can do with a non-verbal child with Autism is to assume they are not bright.” Dr. Temple Grandin

    Why is it ok to assume that someone who is non verbal isn’t smart? If you assumed that with Hellen Keller, you would be wrong. If you assumed that with Stephen Howkin’s, you would be wrong. If you assumed that with me, you would be wrong. Everyone makes it seems that one day Hellen just started talking or that I just had a miracle. It was hard work and the fact that people “my family and workers” wanted to know if I or we as in Hellen and I were in there. It’s one thing to except someone for who they are, it’s another thing to find out if they are who you think they are. Some times you have to get wet in order to know if you can swim.

    So OK tell me you got carly’d, but shouldn’t being Carly only mean that someone around you or your child wants to know who you or your child really have met there potential?

    “We all have a inner voice its just finding a way to get it out” Carly Fleischmann

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    • So OK tell me you got carly’d, but shouldn’t being Carly’d only mean that someone around you or your child wants to know if you or your child really have met there potential?

      Why shouldnt parents have high expectations if my parents didn’t or if Hellen’s and Temples didn’t who knows where we be today! Should you know if your child is in there?

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    • You’re right, Carly, people should never assume that nonverbal means someone isn’t smart. In fact, that’s the very point I make at the beginning of the post, that so many people (general public) make that assumption and it’s wrong. We should never stop trying different ways for people to be able to communicate.

      And I do think you are a wonderful example and am so happy to see that you have found your voice, so to speak.

      I think the point I’m trying to make, that maybe wasn’t so clear is that your neurotypical friend’s parents don’t get videos sent to them by others, saying “look at this super star athlete in Nebraska, little Johnnie can be JUST like him” or “look at this math genius kid, little Susie can be like her.” But in the autism world, people take you or Temple or John Elder Robison, and they email anyone they know with an autistic child with this shining example. And see, us parents already know about all of you. And we also know that our kids are unique, special individuals, and we want them to reach THEIR fullest potential, not anyone else’s. And for some, their fullest potential may fall short of what you’ve achieved. And that’s okay. But why make anyone feel badly by holding you up as the standard, especially if they already have a good idea of where their child is, and it’s not where you are? My friend’s (typical) daughter likes to draw princesses, but I wouldn’t send my friend a link to a Picasso site and say her daughter can be just like that.

      I hope this explanation makes sense and clarifies my point. Just because someone is autistic, doesn’t mean they’re just like you…we’re all unique.

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  23. Pingback: I have been Carly’d, Stevie Wonder’d, Ray Charles’d and Andrea Bocelli’d. | I'm fine, but my Mommy has issues!

  24. I have very high hopes for my son, but the truth is he is severely cognitively delayed. I can’t assume that he is or isn’t a genius; I have to just meet him where he is right now. Carly is wonderful and inspiring. I cried the first few times I’ve seen her and I love her FB updates. But I love my son as he is. If Carly (or Temple or JER) is the standard I may always feel like a failure.

    People mean well, and I try to take them at their intent. But I am not new to this, and it can be frustrating when someone sends me the same video/book/research for the umpteenth time. I don’t mean to be ungrateful, but I spend all day on this stuff, so if someone sees something on facebook or wherever, there’s probably a good chance I’ve seen it. It implies I’m not doing my job, which is to help my son in every way I can.

    I’m sure Carly is a wonderful person, and I hope she and her mom understand what I see from this post. It isn’t about her. It is about helping each person reach his or her potential without comparison or assumption.

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  25. Excellent post and wonderfully articulated! Carly IS an inspiration and she gives me hope for my nonverbal (mostly) little man, but I know he has some cognitive delays.

    I love hearing about Carly, but I do get upset when people immediately assume that Logan can do the same thing. I will be THRILLED if we can find a way for Logan to communicate and I TOTALLY believe the potential is there, and that is he is more intelligent than the dorks at his school give him credit for … but he’s a real little boy with amazing circumstances to overcome. He’s his own little man.

    Thank you for putting this into words!

    Reply
  26. I love your point…which I understood to mean that those that are Autistic AND cognitively impaired need different advocacy efforts than those who are like Carly. While I agree with you 100%, let’s not leave out one point: Carly has become an icon of hope, a light for some who are able. Without her story, many (those 6 out of 10 autistics) would be left without realizing their full potential. My daughter suffers from Autism and mild intellectual disability. Her IQ is well below average, but far enough along to help her obtain many skills that other children whose cognitive impairments are more severe cannot. Had I not known of Carly, or stories like hers, I may not EVER have realized that my daughter CAN learn and do more. As her parent and advocate, the important piece for me was to recognize her potential AND her limitations. Any loss of potential for our children is a loss that we grieve, collectively, as those who understand the world of Autism. While it is important to realize our own children’s likeness or differences to others within the Autism world, no matter what “level of impairment” we are all fighting for the same thing…for our children to be as functionally able as we can help them be. Whether “high-functioning” or more cognitively impaired, these children still suffer a loss…as do we, their parents. I find no use in measuring because my goal and purpose is the same as parents with more cognitively impaired children…to provide my child with loving care and tools to live the happiest, most fulfilling life I can help her achieve 🙂 I am currently working toward my Master’s degree is Social Policy (after achieving a Bachelor’s in Human Services, specializing in Advocacy and Disabilities). Having my daughter changed my life and my world. I used the ten years I have spent at home with her to obtain a degree that could enable me to help those that are less fortunate than me. I AM blessed that my daughter is highly functional…however, I still grieve. I probably always will. The pain of our children’s losses faces many of us on a daily basis. Carly’s story IS an anomaly. She IS the rare gem, a find that is not the norm. But she HAS proven that greater things are possible for some. The disparaging part is when we, as parents, discover that our child is NOT a Carly. It is then that we continue to search for the tools that work best for OUR children…without the Carly’s out there showing us what IS possible, there would never be new strategies, new techniques, or new ways of teaching our children. Not ALL of them work for ALL Autistic children. No more than every Autistic child can achieve the success of Carly. I see children on the spectrum as a different form of typical children…not every typical child can be brilliant, an inventor or an Einstein. They are also individuals with different levels of achievement. Just because these typical children don’t achieve extensive notoriety or achievement, are they any less of an individual? No. I realize there IS a difference between typical children and those on the spectrum…my point is merely that levels of intelligence exist there too. The myriad of feelings that exist when dealing with ASD children is something some may always feel…however, sprinkling in a little bit of hope can never hurt anything. 🙂 While parenting and advocating for children with greater impairments IS much more difficult and mentally, emotionally and physically draining, the impact of our loss is the same. I truly believe keeping our focus on new strategies and techniques that we haven’t tried is essentially to maintaining some level of sanity. Without hope, there is only an abyss of darkness. Carly is NOT the only icon of hope…she just happens to be the most publicized one. Our own children and every small achievement they make is our hope…they do not need to obtain Carly status to be successful! They just need us to keep an open mind and a willingness to find and try new things that just may open doors for them. 🙂

    Reply
  27. While I think that you have a good point in saying that Carly is only one autistic girl, and that most autistics will not be shining stars, you do need to apologize to Carly after she, and her mother, haver clearly expressed here that she does not appreciate her name being turned into a verb.

    Reply
    • I didn’t make up the term. And read my comments to them.

      Reply
      • You may not have made up the term, but some may think you perpetuated it. I think offense comes from anyone who brings potential negativity to Carly’s accomplishments and who she represents…herself. I can understand Carly and her Mom’s position…as well as the position of those that experience frustration because their children are NOT like Carly…there is such a fine line here, and unfortunately, it opened up a huge debate and offended Carly and her family. You may have said some nice things about her; however, that’s like apologizing and subsequently adding a “BUT” statement in the end. It somehow reduces the sincerity and impact of your words. I truly understand your intentions were to support those who were frustrated with having Carly’s success thrown in their face. Unfortunately, it did open the door to others perceptions and feelings regarding the same. This is the first time I’ve ever been on your blog…your writing style is warm and engaging. Kudos to you for bringing up tough subjects…

        Reply
  28. Katrina Phillips

    Here is the thing I think people kinda get all askew with regards to Carly… See, when I hear about Carly, when I read her book and understood her story, when people ask if I have heard of her, or even when I mention her to other people – the message there is never to say “See, my child will be JUST like her.” or “See, YOUR child will be JUST like her.” That is not the point at all. The point, in regards to giving people hope, is to make sure people don’t immediately *assume* that their children are cognitively delayed ONLY on the premise that they do not have expressive speech. Or, at a minimum, not to *assume* that there is no *receptive* language, only because there is no expressive language.

    This happened to Carly for YEARS, this happened to Tito Mukhopadhyay, Temple Grandin, Amy Sequenzia, and many others. Christ, when Jacob Barnett was 3 his preschool teacher told his mom to give up and not bother teaching Jacob the alphabet (insisted on it, actually) because he would clearly never have any hope of reading. And that kid turned out to be a prodigy.

    ***NOW, here is where it is important to not skew my meaning here – NO, I am not claiming that all children who are non verbal have prodigious gifts. But jeez, imagine if his parents had just given up on him because of how “he appeared” at a very young age to be capable of learning anything. (Yes, just finished his mom’s book, this is what they were told). Imagine if Carly had never forced her way onto her therapist’s laptop and typed those 2 words. Imagine.

    Obviously people are going to view everything they are told through the lens of their own experiences and personal circumstances. From my experience, I tend to go with the notion of always assuming that everyone’s kids, not just my own, are *at a minimum* capable of receptive language (understanding words), whether they have demonstrable spoken language, or ever appear to be paying attention or “present” in the moment. (And for the record, yes, I have 2 sons on the spectrum, they were both very speech delayed. My 5 year old still cannot speak, and my 4 year old can speak.. but it is mostly echolalic and scripted. It is functional, if not quite “right” for his age.) Does that mean that all of these children actually DO have receptive language and unimpaired cognitive function? No. Of course not. But Carly is a great reminder to never forget to assume that maybe, just maybe they DO have words and thought and ideas just simmering and stewing, waiting for the day when they will find a suitable form of alternative communication that will allow them to come to the surface and surprise the crap out of everyone.

    I do not view Carly as a yardstick to measure my children against – something to aim for and assume will happen. I view Carly as a someone who spent 10 years of her life bursting at the seams to get her words out – as a reminder that all our nonverbal kids could be enduring this same frustration – and regardless of anything else about our children and their delays – we should all try anything freakin thing we can think of (typing, pecs, sign language, whatever) for, well forever, really… just in case. It doesn’t’ matter if they turn out to be intellectually challenged or prodigous geniuses, all that matters is that they may have something to say.

    Thank you Carly and family for always reminding me of that.

    Reply
  29. Pingback: Macro Lenses: Nitpicking in the Autism Community | Flappiness Is…Flappiness Is…

  30. On another autism example, I was recently “Sparked”. The author of “Spark’ was on the radio today with her genius son (15 and university grad). He was diagnosed with autism at 2. And the mother realized that with all the therapies, he was missing play, so she took him out to give him play experiences. The problem is that people hear or read about this and assume that’s all it takes. If it were true, most of our children would be geniuses.

    Reply
    • Katrina Phillips

      I was wondering when someone would bring up Jacob Barnett.

      I get that people get tired of unsolicited advice, or having stories about other people forwarded to them repeatedly. I do.

      BUT, here is my take on all that. Even though I know Carly Fleischman’s and Jacob Barnett’s stories well (read their books, watched their videos, follow their social media), if someone forwards me a “Hey, have you seen this girl? Or have you seen this boy?” and, of course, I already know more about those 2 individuals than the people forwarding me this information do – I choose to look at it as a good thing. Because, even if I am well aware of the two of them already, and the fact that they are individual human beings who are not necessarily carbon copies of my own children on the Spectrum, it provides me at least some relief that *other* people have, at a minimum, gotten it through there heads that there are *possibilities* available for my children, that being Autistic is not the goddamned end of the world. It’s the same when I am forwarded an idea I have already thought of, an article I long ago read, a meme I’ve seen 1000 times. I don’t’ get annoyed by it so much as just go, well, cool – at least now *they* have that information too and are making an attempt to educate themselves. And that’s a good thing I think. To me, anyways.

      As far as well-meaning folks jumping to conclusions that our kids will turn out “just like” these kids “if only…”. Well. You might remind them what the real lessons to be had from their stories are, and what the most important and relevant points are to all of us. (Or, at least these are what *I* think are the important things for people to know, not just parents.)

      1. No means of expressive speech (such as Carly Fleischman) does not mean you do not have an active mind with thoughts and ideas that need expression.

      2. An outward appearance of very bad behavior (again, Carly) does not mean that you cannot conceive of right and wrong, it could just mean you literally have uncontrollable impulses, and poor physical control over some of the stuff you do.

      3. An educational “expert’s” professional opinion that you are not capable of learning and that teaching you reading or anything else would be a waste of time (what Jacob Barnett’s mom was told when he was all of 3) is not always on the mark.

      4. A child that seems “tuned out” and in his “own world” (Jacob Barnett) is not always wasting time with “nothing going on in there.” Sometimes he is figuring stuff out, it may even be stuff you cannot understand.

      If people want to imagine a fantasy world where my children turn out like those 2 – well, that’s ok with me. I imagine we all have fantasy worlds to some degree for out NT children where they turn out to be Brittney Griner, LeBron James, an astronaut, the president, etc…. Presume competence, right? 🙂

      Reply
  31. Pingback: The Autism talk with Friends. | Kateri Wang

  32. Thank you so much for visiting my blog, and introducing me to yours. And thank you for blogging about Carly. She is one amazing girl. I have worked with severely autistic children for years and well before I heard about Carly I always said there is so much more going on in their heads than we give them credit for. I have seen it behind the eyes of non-verbal autistic children. I hope Carly’s story gives many parents hope. Thank you again for posting 🙂

    Reply

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