A few days ago I wrote about a conversation Emma had where she said she’d like to open a center she would call, “Emma’s Hope Care.” You can read that piece ‘here‘. In addition to writing that the center’s philosophy would be “no Autistic child left behind”, she wrote, “no behavior management.” In response, a commenter asked Emma “What would you do to help children cope with their feelings in our society?”
I showed Emma the comment and asked her to elaborate a bit more on her words – “no behavior management” before asking if she would answer the commenter’s question.
This conversation took several sessions to complete.
A: Hey Em. I was wondering if we could talk about Emma’s Hope Care. Would that be okay?
E: Yes.
A: What did you mean when you wrote “no behavior management”?
E: No ABA.
A: That was a long time ago, when you were just two years old. We stopped when you were four. Do you remember the ABA you had?
E: Yes.
A: Will you tell me your experience of it?
E: I was treated with mostly kindness, but the therapists could not see beyond their training. I learn quickly, but am not able to reply with words that sound right to another.
Worry becomes everyone’s focus.
Real learning happens when no one notices.
The goals waste away.
Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.
During a separate session Emma answered the question, “What would you do to help children cope with their feelings in our society?” from the Conversing With Emma post.
First cope with your own feelings. Second listen to the child. Provide them with patience, accepting their feelings as valid and respecting that this will change as they grow older.
- Emma during the ABA years…
Emma's Hope Book 
“Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.” Miss Emma has been underestimated over and over again throughout her life by people, many of them “professionals.” Although they may have been well-meaning or well-intentioned, the fact that they did underestimate what she could do hurt her more than helped her. Luckily, she has wonderful parents who didn’t listen to the so-called professionals and she is starting to let her voice be heard! I applaud Emma, as well as you and Richard, Ariane!
Thank you so much. Really appreciate the kind words. Watching Emma soar has helped soothe our sadness that we underestimated her for so many years.
I am sure Emma doesn’t fault you for your underestimation because you were listening to the “professionals.” In addition, you and Richard forged ahead to find alternatives to what those “professionals” were trying to force-feed you. Emma is a very bright and caring young lady. I’m sure you are harsher on yourself than she is on you. 🙂
You are so right. Emma is the most forgiving person I’ve ever come into contact with. Doing my best to follow her lead… 🙂
What a wonderful story – so glad you shared this – our children are completely underestimated and your daughter has proven this – as has my son. Thank you for sharing this with the community – so many more parents need to hear success stories and listen to their hearts!
“our children are completely underestimated ” they are indeed!
I have tried for ten minutes to come up with the right words. I don’t have them. I’m just so glad that Emma does.
HA! Was just reading your latest, “Care” post and was about to comment when I saw this from you… Our girls… how lucky are we? Seriously, how lucky?
Emma remembers things from the time she was four. I’ve heard something about that, that people on the spectrum remember way back. I also remember a few things from that age, but not much.
I love the fact that she wants to help other autistic children. ABA i’ve heard, can be very helpful, but then every child is different as an individual. Maybe Emma felt as if she were pressured. maybe with her it had to come naturally.
people do tend to underestimate autistic people. i remember how i was underestimated. people just took one look at me and decided i couldnt do something, and nothing changed their minds. and then when i learned with the right person, i was the best.
ABA isnt necessarily bad for Emma. maybe she just needs the right professional who will have more faith in her. She’s obviously a highly sensitive child.
what i cant get out of my head are the words ‘no autistic child stays behind.’ i love it.
I’ve also encountered anecdotal evidence of autistic people having memories of more, earlier events in their lives than is the case on average. One of my own earliest memories is of collecting my younger brother from the adoption clinic when I was aged 2.
Brilliant, Satisfying, Penetrating, Poetic…Wisdom
Thanks Emma
Wow. Just wow
This is wonderful. It’s so important that views like Emma’s are heard.
“First cope with your own feelings.” That is 80-90% of it in a nutshell. While I do realize that autistic ppl have a lot more to cope with than we do, and that’s part of the equation, so many times autism groups are parents on the me, me, me train. I find myself just wanting so say chill the $&@* out! your child already has 40x more to deal with than you so why insist on adding to it. Ok end rant lol i can’t wait til E is old enough to help me understand him…though I’m sure I’ll hear some cringeworthy things about my cluelessness.
Yeah, that whole “deal with your own feelings” first part was such perfection. I need to have that suspended in front of me all the time! She’s one wise soul!!!
“First cope with your own feelings. Second listen to the child. Provide them with patience, accepting their feelings as valid and respecting that this will change as they grow older.”
I think I’ll put this in a prominent spot on the refrigerator or wall as a daily reminder of what I need to do as a parent. It is thoughtful, concise, and encapsulates it all so perfectly. Wow! Thank you, Emma.
Exactly what I thought when she wrote it!
As usual, Emma’s words are so profoundly wise, loving and compassionate. She has suffered so much from behavior-mod teaching methods like ABA and incompetent teachers, yet she bears no malice. Every time she writes I’m amazed, surprised and humbled. I feel like we are living with Christ or the Buddha. Maybe we would all be Christ or the Buddha if we had a new set of eyes and ears and a truly open mind and heart — one that isn’t controlled by fear and defensive conditioning.
That picture of Emma is just heartbreaking to me. That she was so young and subjected to what basically amounted to torture and yet somehow ABA is STILL the ONLY accepted teaching method for autistic children in the US public school system is truly outrageous. Then again, we live in a nation of idiot’s where in 2014 there is creationism taught in schools as if it were a scientific fact. God to earth: Open your hearts and minds, learn something worth knowing every day of your life, and GROW THE FUCK UP!
I always so value meeting the parents of autistically presenting children I support.
Emma says: “Real learning happens when no one notices”. The first learning we all do, is about what is running in our primary care-givers; and that learning goes unnoticed for a complex of reasons. Then we learn that we are not our care givers; that we are an individual independent of our care givers. Very often what we have first learned is no longer directly accessible to the individuals we discover ourselves to be. Sometimes what we have first learned, is who our care-givers really are, when beyond the reach and effect of fear and defence.
All that you say in a first paragraph then makes sense and falls into place with Emma. Emma is the living flourishing of who her parents and care givers truly are.
Everyone suffers from the conditions of a collective world which is not as it should be and needs to be.
That Emma knows ABA in a collective world in which ABA so figures, is no bad thing. Is indeed a good thing.
That Emma knows what her parents have gone through and are going through, regards ABA and her exposure to it; is a good thing.
As Emma optimises her compassion and forgiveness and Christ/Buddha potential as she chooses, she will address what else figures in the truth of her parents; and that will take her into the landscape of your second paragraph, in her own compassionate, forgiving, wise way.
That your heart breaks, speaks to the truth of you. Emma will learn from experiencing your breaking heart; and that learning too will go, initially, unnoticed.
“Real learning happens when no one notices” When she wrote that, I thought of all the times Richard and I have said to each other, “but how can she know that?” Broken hearts, regrets, compassion, forgiveness… it’s all there being absorbed, being witnessed, ours, hers, yours, the human race…
I think this is a key marker. In the development of Emma’s expressible wisdom; and as a topic for research.
Absorption and learning is occurring apace, for any and all autistically developing children; and we are still to articulate a frame of reference within which to usefully discern and understand and theorise about what is there going on. Emma nails that with her phrasing.
If Emma were to use that phrase in a PhD thesis in years to come, it would stand as powerfully there as it does when she uses it today.
Amazed, surprised and humbled… yup, me too. Me too.
It’s so hope inspiring, and yet so hard to read her words.
It feels like we’ve been fed all these “tropes” of autism intervention in a manner that…I can’t even find words for it. It feels like being taken advantage of, from the parental side. And as parents, we too have to fight to have our words be taken seriously, because we’re not “experts” on anything except our kids.
Never mind what the child him or herself is actually experiencing….
I think, I hope, as more people who cannot speak and/or cannot speak what they intend, learn to express those intended thoughts and experiences through writing, people will begin to take notice and some may even listen. There will always be those who insist all is well with the current, preferred approaches, there will always be those who dismiss the words of those who cannot articulate themselves as well through speech, there will always be those who are dismissive of any (even those who speak) who dare suggest what they believe to be true is not, but many, like Emma, are communicating their experiences and more will join them as time goes on. It is their voices that will shine a light on what is thought to be “true.” Eventually, these things that so many believe, will no longer be the common thinking. And years, perhaps decades from now, we will shake our heads in dismay at what we all were told and so many once thought.
Amen.
I certainly hope so.
I’ve been reading Soma’s book that you recommended – wishing I could just pack up and go to a course, or however it is to get started…Mackie’s para and I are on exactly the same page as far as respecting him and what he wants to do – his one word requests, for instance. The SpEd teacher continues to have her own personal life taking over, and while I don’t want to publicly air anything that would get the para in trouble, I gather she has used the ipad & proloquo to glean what he thinks of the state of things…it’s only a start, and probably nowhere near as eloquent as I know he will one day be.
I look forward to the day when everyone who needs a voice can find the means they need.
All three of Soma’s books are worth getting, but the last one, (green cover) has some great sample lesson plans that I think are really helpful. I know it can seem scary in the beginning, but even if one just commits to working for ten minutes each day, people have had incredible success before they even managed to see Soma.
The green one’s the one I picked up – I left a forum message on her site as well, trying to get turned in the right direction, I’m just unsure where to start with him, maybe I haven’t gotten far enough (about halfway) to see whether there is a means of assessing progress, or whether you’re moving at the right pace for the child…
He’s also just finished a program with the OT & Speech team “Type to Learn” – I don’t know yet what effect this may have on things, because I keep getting told that they’re “not ready” for me to be trained on the ipad. It hasn’t come home yet…sorry, don’t mean to vent…just feeling a little despairing. Just another mom who has screwed everything up for the first 12 years of child’s life.
Are you on Facebook? Are we friends there? If not, send me a friend request, I’ll invite you into a group where everyone is doing or trying or interested in doing RPM. This group has been enormously helpful to me, particularly in the beginning when I was just trying to start and felt as though everything I was doing was wrong.
PS I so hear you about feeling frustrated and in despair and that everything you’ve done has messed your kid’s life up.
I’m on facebook, yes. I see a public profile for you, but not a “friend request” button….
If you want, send me your FB name and I’ll send you a friend request. If you’d prefer doing this privately, email me with your name: emmashopeblog@gmail.com
I just emailed a few minutes ago, thanks 🙂
So wise.
I think “Real learning happens when no one notices” should be the motto of everyone who works with autistic people and other atypical learners. This is what I try so hard to explain about the internal, invisible work and processing that is going on in somebody even if they can’t explain it, appears to be “behind” their peers in typical skills, or can’t demonstrate competence in conventional ways. Just because you can’t see it happening in the way you expect to be able to see, doesn’t mean it’s not happening.
I really love that sentence. It is something I think about all the time now.
She’s so profound and so brilliantly and poetically puts together how many of us feel.
Emma is brilliant and so poetic and spot on. I have never commented before. I am an autistic adult with 3 autistic children and read this blog every day. thank you for sharing this-
Thanks so much for reaching out Courtney!
Emma wins
((((Ibby)))) Ibby, Ibby, Ibby! Ibby, Ibby, Ibby! ((((Ibby!!!!)))))
Dear Emma,
Thank you so much for answering my question. It means a lot to me that you took the time and made the effort to do this. ‘First cope with your own feelings’ is so insightful. If I didn’t know your age I would think that you were much older. From your posts I would think that you were a psychologist or in a similar field. How interesting it would be if you became a psychologist and worked with children on the Autism spectrum and their parents. I think that you might revolutionise the field. Emma, your advice will always remain with me. THANK YOU! 😀
Ariane, thank you for sharing my question with Emma. I really appreciate it. I wonder if you have heard of the Son-Rise Program. It’s an American based program for people who are on the Autism spectrum. Doing this program with our son has changed our lives. I’m not suggesting it’s for Emma, but just making you aware of it.
All the best with your journey. I look forward to reading more of Emma’s posts in the future.
Many thanks
Kylie
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My goodness, her words are so beautiful. She has such a writers gift, Ariane. I always read with two ears: to learn, and to marvel at her diction and syntax. Her voice is so thoroughly her own. She is so young to have such a command of her words. Marvelous. I think she needs a publisher.
I wish i could bring you to mt son’s case conference tomorrow,
Reblogged this on Melissa Fields, Autist and commented:
No ABA. If i had an Autistic child, i would not subject them to it.
Your child Emma is a delight. So full of compassion, she reminds me of my son with Aspergers. His joy is working with younger children.
I felt so bad that she had such a negative memory of ABA.
I am the aunt of two children with autism and a mother of a child with Aspergers. I know the term is now Autism Spectrum Disorder, but I support my son’s right to identify with the term of Aspergers which has a cultural as well as diagnostic implication. He is an Aspy or as he calls it “sub-Ninja”
My nephew made phenomenal leaps and bounds once he was enrolled in an intensive ABA preschool program at a prestigious university.
After a long absence from the workforce, helping my son, I decided to become a behavior analyst who designs ABA programs.
As a parent, I can say that anyone who does not respect your child’s human rights and does not share your vision of your child’s future should not work with your child. As a parent of a child on the spectrum, I am very sensitive to family and ethical issues.
My son with Aspergers was suspended 4 times in one year in middle school and transferred to a school for “emotionally disturbed.” We had little hope that he would graduate high school. I quickly learned about changing problem behaviors with ABA. It was not an easy road, but use of ABA made it possible for him to graduate high school and go to college. He is a psychology major at a major university who wants to work with children struggling in school.
I had heard terrible things about ABA I was not sure that I would like ABA until I started my first college course in ABA. The emphasis was on improving the child’s life, respecting their human rights, opening doorways to new opportunities, and assuming that every child can learn – (it is the teacher’s/therapist’s responsibility to create a conducive learning environment). That was a message that resonated with me as a parent. To be honest, I was tired of years of teachers saying that my child was not trying or being disrespectful. He did wonderfully when he finally was in a supportive environment which used a self monitoring plan to control his emotional outbursts.
Some children like my nephew have wonderful gifts that manifest later. He was diagnosed severely mentally retarded before treatment, but five years later was accepted to a national organization for the profoundly gifted. ABA did not make him profoundly gifted. ABA did however take a child who, at 2, had no words, no interest in parents or play, and gave him words, and play skills. He took these words and skills and surpassed everyone’s expectations. Another child could not make his progress, but he could not have progressed this far without ABA. He would have spent years opening and closing doors and lining up toys. He would not be reading 5 grade levels above average.
Like many parents, they tried a variety of therapies for their child (floortime, sensory integration, etc). Lots of therapies have feel good descriptions that warm the heart, but few deliver consistent results.
ABA does not create miracles. It does however provide tremendous opportunities for children who are making little or minimal progress. ABA is about creating opportunities where it is impossible for the child NOT to learn.
ABA (or any therapy or education) should always incorporate your family’s traditions, your child’s strengths and preferences.
Evaluate any therapist or teacher like you would a doctor, Do they assess what the problem is, do they give the correct treatment at the correct dosage and frequency, do they check in to make sure the symptoms have improved? These are basic issues we should expect any provider to address.
I have had some pediatricians who were terrible doctors. I have not however given up on the effectiveness of medical treatment.
i truly hope that parents do not exclude ABA from their options. I have seen “miracles” with ABA. They are defined by the child and not society. They might be the child with autism who was expelled from public school for aggression and is now volunteering in his favorite video shop and living independently in a group home. For that child, it is a wonderful outcome that was inconceivable before ABA started.
It might be the nonverbal preschooler who refused to join circle time,but is now in a typical kindergarten classroom (with an ABA shadow) helping classmates with math worksheets.
It might be the simple joy of having a 4 year old noverbal child finally being able to tell their parent what video they want to watch by giving a picture card.
These are all experiences I have had working in ABA..
These are life changing events for the child and family.
When used by a competent professional every child will learn new skills with ABA. No guarantees for “normalcy” or when, or if, they will speak vocally. Who cares about making a child “normal.” I don’t want them to be ostracized, but I do want them to find a circle of friends in college who appreciate the finer qualities of “Doctor Who.” This is about our children having opportunities to make decisions about what they want in their future.
I would be proud to work at Emma’s Hope Care. If she decides to open a West Coast branch, let me know 🙂
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We just found out yesterday that my almost 5 year old son has Autism. I’ve known it for quite some time but had not received a diagnosis. They want me to put my son through ABA therapy, but in my heart I immediately knew that this was not for us. I’m sure there will be back and forth disagreements between the “professionals” and me once I inform them that I have decided not to go through this controversial therapy. I’ve already had several disagreements with the “professionals” over my decision to homeschool my son-I have homeschooled my other children for 6 years now. This is my child and I will always do what is best for HIM. I tell every doctor I meet that I never want to change Thomas (my) son, as I love him how he is. Thomas is in speech therapy now and will be receiving occupational therapy, but as far as ABA therapy…absolutely not. Thank you for your post. Along with this post and other research, I now see that I am not the only one that was manipulated into believing that they would be hurting their child by not agreeing to this therapy.
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Great post thhanks