What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.
In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.
There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.
The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.
There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?
Photograph: Pete Thompson Photo
Emma's Hope Book 
A terrific post!
Sent from my iPhone
Tremendous writing Emma. As a special education teacher and father of a son, Noah, age 14, with autism, your words hit home in both arenas. We are still digesting Noah’s first encounter with Soma. He was able to show the quickness of his mind, the range of his thoughts, and the accuracy and ease of his memory like he never could through the speaking channel even though he has always been quite verbal. Noah is extremely aware and compassionate. He met another boy seeing Soma who was having extreme anxiety and he reached out to him and found a way to make friends with the boy. Perhaps you two will cross paths some day.
Reblogged this on Spectrum Perspectives and commented:
So much more than meets the eye…
Wonderful essay Emma. Once again you knocked it out of the park.
We didn’t have a real choice when it came to our decision to homeschool Emma. We tried a very expensive private school who supposedly specialized in educating autistic children and were mortified that they considered “Billy Goats Gruff” a learning curriculum as Emma mentions in her wonderful essay. BTW, that was the Rebecca School in New York, and if anyone is considering plopping down $100,000 in annual tuition there, I suggest investing in a hedge fund instead. Our experience in Special Education Public Schools was equally disappointing, though the last one at least tried to accommodate Emma’s communication needs. At any rate, this is a situation in dire need of change and I hope Emma’s words reach someone in the education system that can make a real difference in the way speech-challenged students are educated.
Thank you so much Emma for letting the world know just how brilliant you are and how every person on the spectrum should have access to a decent education and not a faux “education” like hundreds are getting in these schools that are nothing more than high paid babysitting.
Richard, thank you too for pointing out just how ridiculous it is that these schools are pulling in $100,000 (or more) per year and doing pretty much nothing and calling that an education for children on the spectrum. It is something that has always infuriated me and these schools and ABA centers are scamming people everyday imo. Even more horrifying are the parents who accept little to no progress and are brainwashed into thinking this is the best their kids can do. I see minds being wasted daily.
Even more frustrating are the years these kids spend in the ABA centers and day schools, little no no education is given and little to no progress is made, the kids obviously get frustrated, the school then blames the “behaviors” (due to ineffective means of communication and boredom) on the kids and then the kids get shoved in a residential facility where “education” and effective communication goes downhill even further. Their lives are paved by the ineffective people at these schools. I wish parents would wake up and see this but it happens daily.
Thank you Emma and her parents for showing the world not to settle for less! Keep educating everyone!
Ann, i feel like you just described my daily life – i am employed as a teacher aide in one of these classrooms, where “i see minds being wasted daily”. is it like this everywhere? i have not been shy about my opinions in the classroom about the ways things are done. i have tried to offer suggestions and insights, but to no avail. i’m not sure i will make it through the school year, because i feel that i too am being wasted. although a tragedy, i guess it’s refreshing to know there are others who see this serious problem for what it is.
Awesome…im at a loss for,words…very eye opening and i admire what is written here… I wish her all the best…its about,time this has been brought out..
Like you, Emma, I’ve had the experience of the best teachers and best learning experiences being the ones who didn’t have any kind of special training for autism. They’ve been the ones who take my sometimes needing to write or type instead of speak in stride instead of being very concerned about my ability to participate in (or teach) class that way.
Emma, this is one of the most important pieces I have read in some time. The idea that students are limited by the inability of a system to quantify their ability and intelligence correctly has been brought up many times. Educators at the forefront know that the assuming lack of comprehension is wrong and one must assume comprehension unless there is evidence to the contrary. The lack of evidence is not evidence. Your essay pushes this even further with a demand for measurement analysis; school need to prove that the measurement techniques are appropriate, correct and reliable before using them to determine someone’s educational future.
Thank you for making the effort to write this piece, it has great meaning for many of our parents, families and most of all, students.
One of the best things that happened for my daughter was a 6th grade teacher who taught the class touch typing. DD became obsessed with typing, practicing for hours every day, and is now a skilled typist. With a keyboard, she was able to demonstrate her knowledge and abilities in a way that wouldn’t have happened otherwise, even though she is very verbal.
Good luck to you. I hope all of your dreams come true.
Reblogged this on Teachezwell Blog and commented:
I cannot say enough about the resilience and hope found in Emma’s journey. Be sure to sponsor her Unspoken documentary on Indiegogo, if you can. Emma gives a voice to so many kids I’ve taught, students who were assumed to be oblivious to others and unable to feel emotions, trapped in a body that made communication such a challenge. Emma’s mom NEVER gave up on her delightful daughter!
This is an important and well-written piece as always Emma, but I do think it might have benefited from an acknowledgement that yes, we should not presume that non-speaking persons are intellectually disabled, but we should also not treat intellectually disabled persons as though they are ‘less than.’
The issue isn’t just “I thought my non-speaking child was intellectually disabled but they aren’t” but also “I thought my non-speaking child was intellectually disabled so I held them back, underestimated them and assumed they could not learn or grow.” Everyone is capable of learning and growing, everyone, and I think all school curriculums should have that in mind – as well as considering that handwriting and mouth-speaking demonstrably do not meet the bar for allowing disabled students to express themselves, intellectually disabled or not. I think a broadening of minds on this topic would benefit everyone, no matter their neurotype or intellectual ability.
Thank you Emma and all of you who have posted. As a mother of a 9-year old who has been using the letter board for almost 2 years and just started the keyboard recently, I am going to make a hard copy of this post and pass it out to everyone we know. As well, i’m going to forward it to everyone we know.
I hope you will continue to share how you are successful navigating the educational system and process you are in – and what we can do to help our sons and daughters teachers – esp. those that have to re-train their own thinking.
Most importantly, I can’t wait to share this with my son Luke, who is looking to other peers like you, who truly understand what it’s like to have these special gifts and talents – and understand that we have to help the rest of the world who still needs to discover, understand, and truly appreciate the unpaved path we are all on – as students, parents and communities.
if you have a special place on your blog to communicate with your peers, please let us know!
Bless you and your family – and your new school for their amazing capacity and insight to have faith and believe.
Beautiful! My son had speaking challenges when he was little, and still stumbles a bit if he’s tired. What I’m learning as he’s growing up (he’s 13 now) is how brilliant he is. Like you, his brain thinks very fast. And he doesn’t perceive or process the world the way a neurotypical person does. If I based my judgment about his intelligence on how he does in school, I wouldn’t know half of his amazing-ness. He has little to no patience for things that don’t come easily for him, so reading and writing are most definitely not things he chooses to do. But when he’s interested in something, he’ll research online until he knows all sorts of things about it. I had to really shift my perspective on what are the gifts that a child like my son brings to the world.
I believe that people who are extremely sensitive to our world (to energy), who are on the autism spectrum or who share commonalities with those on it, have the ability to perceive things on many more levels than the average person. They (you) perceive several dimensions at once, and pick up on thoughts, feelings, and more, and can often tap into what I see as the big informational cloud in the sky that contains all knowledge of everything. I know a 26 yr. old who has Asperger’s, who can do this tapping into the cloud thing, who can access information just by his intention. (Check out his book, The Words of William, Vol. One, by William Bale).
This touched my heart so much. I have always said my son is so much smarter than people think he is. He is non verbal but not stupid by any means. I would get so annoyed when he would come home with school work that kindergartners did. This article is so precise on how I feel about my son and what he may be feeling. Hoping he finds a way to express it just like Emma. This made me sad and optimistic at the same time. Thank you Emma for sharing.
Reblogged this on Totally Abnormal and commented:
This is so amazingly articulated. Everyone has the ability to learn, and it is the barriers of society that have taught us to presume otherwise. The solution is not a denial of disability, nor is it a denial of competence. The solution, as Emma articulates beautifully, is the realization that the basic human right to communicate and learn applies to everyone, regardless of their neurology or method of communication. Schools must learn to adjust to the needs of students, rather than attempting to fit them into boxes of any sort.
Reblogged this on bunnyhopscotch and commented:
A bitingly powerful post from Emma again. I have nothing more to add. Please read it in its amazing entirety!
Fantastic article—you’re an amazing writer!
bitte keine
Emails mehr..
thank you-ende !!!!!!
Gesendet: Dienstag, 09. Februar 2016 um 13:55 Uhr Von: "Emmas Hope Book" <comment-reply@wordpress.com> An: neuseeland5050@gmx.de Betreff: [New post] Can Speech Challenged Students Get an Appropriate Education?
emmazurcherlong posted: " What would you do if the whimper in your heart could not find the right words to speak? What if you couldn't control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflecti"
Thank you Emma for sharing your thoughts. I greatly appreciate this article.
Well said Emma! You can do whatever you set your mind too doing ; no limits.
SCruz
Love your article xo
Yes…and yes… I am just ike that–or I was a child just like that…and then I tried hard not to be so I could support myself with a job. That didn’t work, so now I am back to me… Can you imagine that so many like us now have Doctorate degrees, and travel around lecturing on autism? I think that once we can speak, people don’t believe we were ever autistic. Like the smoker who is jealous because I quit, saying I must never have REALLY been a smoker! Just keep writing and being your beautiful self, Emma.
“I have learned that everyone is delicate. ” That is beautiful. Can I put it on Instagram? (With your name on the quote of course!)
Emma typed, “Yes”
yay! Thanks Emma!
A very insightful piece into the mind of a beautiful talented young lady who clearly knows what she is talking about.
Yes, I would 🙂
Emma – you speak more eloquently than anyone I know. We have never met in person but I have seen your progress. I started talking to your mom several years ago. It was at that time I began to see that my daughter was so much more than a little girl who didn’t speak.
I have you and your mom to thank for that, Emma.
Although Risa still doesn’t speak, we continue to work on methods of communication, and I really believe we’ll hit on the right one someday.
It’s been an honor to watch you grow up, and to be witness to the stunning progress you’ve made, changing people’s perspective on how they perceive autism.
Don’t ever stop what you’re doing, Emma, you’re changing the world.
BEAUTIFUL, BEAUTIFUL POST.
I’ve just come out of my son’s IEP meeting where I – a verbal autistic parent – struggled to convey a very similar message to what you have written here. I begin to see him able to express such things himself as well.
Thank you.
What is it with education that no matter who is the student it mostly misses its mark?
I loved this essay just like the previous works of yours. I want to read more about your experiences and maybe get more details
Reblogged this on Normal Is Just An Average and commented:
This is such a profoundly important #ActuallyAutistic post. Why it is so important for parents and educators alike to believe in us and ensure we have the opportunity to succeed.
Thank you so much for writing this wonderful article. My grandson who is almost seven was non-verbal until last year when he started talking after spending two years in speech therapy. Although he is not on the spectrum he was born with low muscle tone. He has been delayed in many physical areas which makes writing very hard for him. They have tried many different things to help with him for example weighted pencils, larger crayons but he still struggles. He is now able to use his I-Pad because he can push hard enough on the buttons or letters to play a game or start and pause and stop . video’s. His speech has improved so much and he is now able to talk in sentences that people that don’t know him can understand. There are still many times when he is trying to tell a story or explain something to us we can only pickup,some of his words. His latest state tests placed him above grade level in reading and math. Some times he will act out his story so it’s like playong Charades. He is very mechanically minded and has to figure out or be told how everything works. It is amazing to watch his mind work as he figures out what the pipes under the sink do and how the water flows into the pipes and out of the house, but that is never enough he needs to know where the water goes from the house! He works so hard to communicate. The devices he has been offered to use he doesn’t like and won’t use as he prefers to speak his words. They are going to start him typing soon and our hope is he will love communicating this way because his i-pad is with him all the time outside of school. He is so smart,social and loves people. Everyone is so charmed by his outgoing personality that adults and children alike love him. He is in a regular school but has a full time para. He was in a private school from age two until this school year. We had many many doubts he would do well in public school but he is thriving. I know this is long but I get so excited when I have the chance to talk about him to people that understand who he is inside and how capable he is to learn and succeed. Thank you for reading about him and caring that we need to find better ways for these kids to talk to us.
Reblogged this on Rambling Justice.
@D. Gregory-unfortunately it is like this at many of the schools. The typical pattern is this… public schools can be horrid so the child gets placed in a private center. These centers typically cost at least $100,000 per year, some much more. Ineffective, rote teaching occurs, not enough supervision is provided to the therapists and the child gets worse. The “autism” is, of course, blamed when in fact it’s the ineffective teaching. The child is then left to be frustrated year after year or placed in a residential facility usually very far from home. Can you imagine what the child must feel this entire time? It is horrible yet parents continue to raise money and support these ineffective schools rather than look for a more effective way of teaching their children. Autism has become big business and these schools know they can do little to nothing and still get paid big money. It’s really unfortunate.
Also, the ABA centers, in particular, focus so much on daily living skills as they have NO CLUE how to educate at grade level nor do they have ANY CLUE how to teach extended language and communication.
Wonderful article, Emma. Thank you for sharing these insights.
What a fab piece, I find it gobsmaking that they don’t talor your curricula to your skills , . I support kids with special educational needs in the uk I’m currently volunteering at special school that specialise in autism and communication , they talor the kids communication methods to their needs and they are also in courage if they are bright enough to complete formal qualifications.
Thank you Emma and thank you to her great parents for knowing there was an intelligent, wonderful girl in there that simply needed a way to communicate. The following is part of a blog post by a mother (Danna Banana) and it disturbs me to no end. She placed her two autistic boys in a group home while they lived in CA. and then the parents decided to move to Ohio leaving the boys behind. What bothers me even more than this is the fact she conveys here in this post that they don’t miss her and think she’s special anyway when she’s not there (as if they are just that stupid!) at least in “anyway they can express.” So she just leaves them there with no ability to communicate assuming they don’t care. This is what is ultimately wrong with the ABA industry and most therapy in general for severe autism. NO ONE presumes competence.
By Danna Banana (blogger):
“Thank you 2015. You really delivered the goods.
Ohio is changing us a great deal. Away from everything familiar combined with the lower maintenance living space, the dynamic downtown location and some truly cool stuff around us, we are having quite the adventure.
There is the added dimension of being so far away from the boys. All the physical spaces in my life have changed. I am far more physically active than I have been for the last 20 years. It means I am out and about on my feet with lots of time to think.
What is real is that the boys’ level of contentment is tied very closely to a very short list of things and seeing me is actually not on that list.
Don’t get me wrong, they are very clear that when I am around, they get to do stuff, eat stuff and ride in the car. But they also have that even if I’m not present. I’m still not special to them. At least, not in any way that they can express.”
Great post. Thank you for giving us a glimpse into your experiences. Thanks for daring to be one who stands up, speaks out, and catalyzes change. You’re amazing!
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Kids on the spectrum will never get an appropriate education in places like this that’s for sure. The response underneath this article speaks volumes! ABA centers and most schools will never understand how to teach or respect communication.
From the Boston Globe:
School expands on mission to aid autistic children
When a particular student acts up, Amy Giles sometimes places the girl in a tiny, windowless room and closes the door. Then Giles stands outside the closet-like chamber, waiting patiently until the child settles down.
If it were another child, it might seem cruel. But Giles, a Westborough resident, is probably that student’s best chance for a quality education. Giles teaches at the New England Center for Children on Route 9 in Southborough, a school that is at the forefront of educating children with autism, a neurological disorder that dramatically inhibits the way a child learns.
“We don’t want to be the biggest program for autism,” said Judy Cunniff Serio, director of administration. “We want to be the best.”
So when Giles sends her student into that tiny room, it isn’t punishment. It’s a treatment called “removal for reinforcement” for a girl with autism who exploded because it was time to move from one lesson to the next. Without the serenity of the room, Giles’s student might never regain the focus she needs to continue a day of learning.
“She has a little difficulty with transitions,” Giles said, not without compassion.
“There are a few upsetting things about this article. First is that this school seems to think it’s ok to place children with autism in isolation rooms, because after all, they’re autistic. They can’t be expected to be treated with the same dignity and understanding as “neurotypical” or even other nondisabled children, because they’re “autistic” (sarcasm fully intended).
For the record, “autistics” aren’t the problem; it’s individuals who don’t know how to communicate with them that’s a problem – either unintentionally or deliberately – and that’s understanding that a child with autism may react with aggression when met with aggression. It’s because the people who worked with this little girl refuse to learn how to speak “her language” [credit to Amanda Baggs, a “nonverbal” adult with autism] that this little girl is punished for behaviors directly related to her disorder, which, by the way, is illegal.
Next, how is “isolation” therapeutic in this incidence? The little girl in question has been identified as having difficulty with transitions, as do many idividuals with autism. As a person with autism, she also has difficulty communicating in a way that “neurotypicals” understand, and so uses “behaviors” to communicate. If they know she has “a little trouble with transitions” and communicates the feeling of discomfort, unreadiness, or unpreparedness by “acting out,” why aren’t they using that knowledge to develop a “functional behavior assessment” to determine what “positive behavioral interventions” and techniques could be used to ease her into transitions, such as the use of a timer or countdowns, frequent verbal reminders, a pictorial schedule which she personally can use (PECS, etc.) or other techniques that are proven to be effective in addressing transition issues, and provide her with alternatives to communicating her needs, such as how to say she isn’t ready to “transition,” or maybe she just needs more time to process what was asked of her, rather than adult, teacher-enforced isolation, which research does not prove to be as effective as positive behavioral interventions, interventions which are to be used in accordance with IDEA law?
Using isolation is not going to address two of her core deficits: a problem with changes in routine and communication. How is she ever going to be a productive member of society if she’s not given the “tools” or “skills” to become better adapted to change? No, let’s just treat her like a common criminal and lock her up in this tiny room until SHE calms down.
Putting her in this room may only be reinforcing the very behaviors they wish to “extinguish.” Maybe she’s come to associate transitions with isolation, and so communicates her fears the only way she knows how, by exhibiting “behaviors” relating to the natural “fight or flight” instinct, or maybe she’s communicating by exhibiting “behaviors” to “explain” that she’s not appropriately prepared for a change in routine at that time, but maybe would be with appropriate preparation; instead, they “treat” her “behaviors,” her attempts at “communication,” with isolation. They’ve said it themselves, “removal for reinforcement.” They are using isolation to “reinforce” negative behaviors instead of “reinforcing” and “rewarding” positive behaviors. This child is destined for failure under this plan.
I’m tired of children and adults with autism being blamed for their “behaviors.” Those “behaviors” are their way of communicating with us. Are they always appropriate? NO. Can we always figure out what they’re trying to communicate? NO. Can we give them tools and skills and other methods to communicate more effectively? YES!!! But we “neurotypicals” who work with children with autism also need to take ownership of OUR OWN ACTIONS and yes, even OUR INABILITY to understand what they’re trying to say, THEN we will see change for the better. It’s time to stop “passing the buck” for OUR inadequacies and blaming individuals with autism.
Sorry, but if this school wants to be the “best,” they need to try harder and stop punishing kids with autism by putting them into seclusion. Sounds like they’re doing a lot of things right, but they also have a ways to go.
Posted by FamiliesAgainstRestraintandSeclusion at 10:57 PM
Labels: Commentaries and Opinions”
Thank you so much for commenting. This is very, very upsetting, though sadly, not surprising. Can you include the link to that article here, for those who might be interested in commenting directly to it? Thanks again.
Great comment, worthy of its own post (on your blog?). I’d love to share this if you do post it. The most upsetting aspects of this for me are the way the article presents the bullshit this school is promulgating as factual, and worse still, that this is a reasonable and even compassionate approach. Where is the journalistic skepticism? An opposing viewpoint? The lack of any challenge to this barbaric and completely unfounded approach to “learning” serves as a ringing endorsement of their hollow and ludicrous claim of being the “best” school for autism. More like the best school of inducing PTSD.
Here was the article. It was an older article (from 2007). There was no apparent place for any comments. Trust me, up here the majority of parents are clueless and there is no challenging places like NECC. Most accept this place as the holy grail. This and many of the other centers up here are no better. The ignorance is stunning. Restraint and seclusion is the name of the game with no idea how to educate or teach communication. A truly sickening way to “educate” kids imo.
School expands on mission to aid autistic children
Teacher Jessica Thompson instructs students during a preschool class at the New England Center for Children. Teacher Jessica Thompson instructs students during a preschool class at the New England Center for Children. (PHOTOS BY BILL POLO/GLOBE STAFF)
By John Dyer, Globe Correspondent | August 9, 2007
When a particular student acts up, Amy Giles sometimes places the girl in a tiny, windowless room and closes the door. Then Giles stands outside the closet-like chamber, waiting patiently until the child settles down.
If it were another child, it might seem cruel. But Giles, a Westborough resident, is probably that student’s best chance for a quality education. Giles teaches at the New England Center for Children on Route 9 in Southborough, a school that is at the forefront of educating children with autism, a neurological disorder that dramatically inhibits the way a child learns.
“We don’t want to be the biggest program for autism,” said Judy Cunniff Serio, director of administration. “We want to be the best.”
The center, founded in 1975, is in the midst of a major expansion.
In November, the center plans to open its $5.5 million, 11,400-square-foot Therapeutic Aquatic Center, which includes an Olympic-sized swimming pool and conference rooms for staff and students.
And in June, the center signed an agreement with health authorities in Abu Dhabi, the capital of the United Arab Emirates, to start a program for autistic children. Teachers from the center will start their first lessons with 48 students at the end of the year, and over the next 10 years, the center hopes to expand the program to include 100 staff members, with half coming directly from the Southborough campus.
The school is distinguished by its emphasis on both educating students and conducting research. While she works as a teacher, for instance, Giles is also earning credit for a master’s degree from Northeastern University in applied behavior analysis — a term that covers the study of how one’s surroundings contribute to behavior change. The discipline is the center’s specialty, according to Cunniff Serio. The center also offers degrees through Framingham State College and Simmons College.
“You become a really skilled clinician as a teacher with all those experiences,” said Sally Roberts of Watertown, a former teacher at the center who now works there as a psychologist.
So when Giles sends her student into that tiny room, it isn’t punishment. It’s a treatment called “removal for reinforcement” for a girl with autism who exploded because it was time to move from one lesson to the next. Without the serenity of the room, Giles’s student might never regain the focus she needs to continue a day of learning.
“She has a little difficulty with transitions,” Giles said, not without compassion.
Children grow mentally by watching their mothers and fathers, brothers and sisters, and other people around them, Cunniff Serio said. Healthy kids do it every day, as any parents watching their child learn how to take their first steps, play catch, or speak a foreign language can attest.
For autistic kids, life isn’t that simple, Cunniff Serio said. They don’t glean lessons from their environment. They don’t necessarily notice how their big brother sits quietly at meals. They often can’t focus on the conversations going on around them.
Most autistic children start showing signs of lacking the tools to develop normally by 18 months, she said. Forty percent of autistic children do not speak, for example. Many shirk from meeting other people’s eyes. But some may appear normal and are able to operate normally or might even excel in other ways.
Cunniff Serio remembered one autistic student who had an extraordinary ability to calculate dates in the past and future, for example.
“He would say, ‘Judy, when were you born?’ and I would tell him and he would say ‘In 1999, your birthday is on a Tuesday,’ ” Cunniff Serio said. “But he couldn’t tie his shoes.”
Some autistic children might need to be taught how to use a computer that allows them to touch symbols that signify when they want to eat or take a rest. Or they might need to sit one-on-one with a teacher in a cubicle that shuts out distractions, allowing them to focus on simple lessons, like drawing circles or other shapes.
“Just teaching a kid to make eye contact with you and say your name is huge,” said Roberts. “Those are big successes.”
Parents whose children attend the center said its atmosphere makes the best of a hard situation for families.
“From the minute we walked in the door and saw the preschool and the teachers training the kids with one-to-one teaching, we wanted the boys to go there. We knew it in our hearts right then and there,” said Angela Masiello, a Boylston resident whose 11-year-old twins have attended the school for almost nine years.
If the boys hadn’t attended the center, Masiello said, she believes they’d be in far worse shape. The boys cannot speak, for example, but they express themselves via the special computer touch pad.
“I think right now they’d still be locked into their own world, not looking at people with eye contact, not wanting to communicate,” she said.
It’s not easy work. The center employs 450 teachers and 250 staff members who oversee 235 students, some on a 24-hour basis in 17 group homes throughout Boston’s suburbs. The cost of educating one student runs from $57,000 to $285,000 a year, depending on the severity of the child’s condition. The center’s budget is $40 million a year, said CFO Michael Downey.
Students from as far away as Kuwait, Qatar, and Bermuda attend the school, but the vast majority of students are local.
© Copyright 2007 Globe Newspaper Company.
Click link for full article:http://www.boston.com/news/education/k_12/articles/2007/08/09/school_expands_on_mission_to_aid_autistic_children/
Finally, Michelle Dawson wrote a great blog post about this article back in 2009. Just to give you insight into the ignorance of people regarding this place just look at a couple of the comments below from “KeithABA” from that blog post. This… this is the horrible attitude and view of autism from teachers and others the kids are dealing with day in and day out. I think the ignorance from most in the ABA field in knowing how to teach kids on the spectrum shows itself clearly when he says, “where are the proposals as to what the teacher should have done instead?” Seriously? How about teaching an effective means of communication! It appears to be all about compliance!
(And thank you Emma, for showing how learning needs to happen. It will never be from places like this.)
“KeithABA said…
I know nothing of this school in the reports, but I do know of the NECC and will continue to support their use of time out as long as other less restrictive interventions have failed.
I think it is also far less traumatic for a child to be in a time out, than to be spanked or physicall restrained.
Finally, no one discusses the other children and disruption of the learning process for them. Should the teacher change the lesson plan because 1 student became upset? Should they allow the child to disrupt the class and just wait until she is ready to go on with the lesson plan? When does a behavior problem become significant enough to warrant a punishment procedure?
Your not an advocate unless you advocate something. So where are all the proposals as to what the teacher should have done instead?
10:09 AM
KeithABA said…
It’s also clear from the article, that this teacher doesn’t have or use many other strategies to deal with challenging behaviors as evident from this statement:
“In one incident in October 2007, Mrs Pearson tore up one of Melanie-Rose’s certificates for good behaviour in front of her and the class, Mrs Wichmann said. On another, she locked Melanie-Rose outside the classroom during teaching time, later admitting her actions had been ‘inappropriate’.”
Use of Time out at the NECC is systematically done, faded out and not the primary strategy for reduction of the behavior, never done for 10 minutes, and data is also collected to assure it is effective for the behavior that is targeted for decrease.”
About four years ago I wrote a post (this was before Emma took over this blog) and cited Michelle Dawson’s piece on ABA – https://emmashopebook.com/2012/10/10/tackling-that-troublesome-issue-of-aba-and-ethics/
I had to delete dozens of comments from (and finally blocked) three ABA “therapists” who were so irrational and furious they could not control themselves. They accused me of creating “falsehoods,” threatened me and personally attacked me. It was absolutely incredible. In all the years this blog has existed all but one person I’ve had to block for making personal attacks and threatening comments have been ABA therapists.
Incredible…
Sadly Ariane this behavior by ABA “therapists” does not surprise me at all. I see it all the time. Isn’t it ironic that the people who tell parents they are experts at teaching calmness and self control can’t even act civil and control themselves ? While some BCBA’s and ABA therapists try to come across as open minded deep down the majority are rigid and controlling. This is how they are trained and to change their minds to a different way of teaching is nearly impossible. This is why, imo, so many of the kids continue to remain very rigid and rote themselves. When you truly look at ABA it’s no wonder so many kids only progress so far. BCBA’s and ABA therapists have absolutely no clue how to teach and encourage true communication, they have no idea how to teach academics beyond the rote, limited kindergarten academics and above all they have NO clue how to bring out theory of mind, joint attention and everything that encompasses that. I think the most discouraging thing of all is that parents accept this and continue to support the ABA schools that accomplish so little with the kids. The fundraisers are never ending in my area and the schools get paid hundreds of thousands of dollars and in the end the majority of kids end up in some residential unit and have learned little. What a waste and so heartbreaking to see.
Can Speech Challenged Students Get an Appropriate Education?
Probably not, unfortunately, simply because non-speaking people tend to have language issues that cause them to test low on language-biased IQ tests, after which they are constantly underestimated. (Disclaimer: I am not a non-speaking person.)
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I remember the time
Nobody heard
My voice
How I used to cry
Hurt inside
Nobody knew how
I got really angry
Before I could type
They ignore my feelings
Fort I don’t hear
Fort I don’t understand
Can’t give very much time
To help me
By understanding I can’t take
There easy words
Of I see retarded child
Who doesn’t greet everyone
Or have words
Just funny body
That doesn’t work
Finn
7 years non verbal autistic
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Such an amazing way of describing this. I too as an autistic person can express myself so much better through typing out my thoughts when not under time pressure.
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Thank you so very much for this! My boy is only 4 yrs old but is already having these same struggles bc he cannot speak. He is not social with those at school but he is with us at home. I am so sad bc I know he is missing out on much bc no one knows or believes how smart that we know he is!!! I wish we could find a school like yours!! Keep marching on & “speaking” out in your way LOUD AND CLEAR!!!! It’s GREAT!!! And wonderful for the rest of us!!!