Autism Thoughts

This is one of the biggest gifts we get being arou...

2012-01-12T18:07:47.899-05:00

This is one of the biggest gifts we get being around children for big chunks of our days!

What a wonderful reflection. I laughed out loud w...

2012-01-05T14:35:29.749-05:00

What a wonderful reflection. I laughed out loud when reading #3 of why you did what you did. That is completely relatable! Thank you for sharing this. I think you hit some nails right on their heads.

Oh, Sue...what a poignant and meaningful story. T...

2011-12-08T18:14:49.703-05:00

Oh, Sue...what a poignant and meaningful story. Thank you for sharing such a personal and powerful story.

BTW, I like the new look of the blog! I usually read your posts in my Google Reader so I haven't actually "been" here in awhile.

Hmmm... I would take some time to really think ab...

2011-07-11T18:52:52.758-04:00

Hmmm... I would take some time to really think about it because I can be impulsive. I have also turned to my partner for advice since he and I share a field somewhat. Also, we are of two different personality types so his perspective has been helpful in deepening my understanding of others and their actions.

That being said, if I were to respond to the e-mail, I would ask the questions you have on your mind and proceed from there.

For 40 years JRC has provided very effective educa...

2011-07-06T20:16:21.666-04:00

For 40 years JRC has provided very effective education and treatment to both emotionally disturbed students and students with autistic-like behaviors. Please visit http://www.judgerc.org/responsetoblogs.pdf to learn more about our program.

Response to Nikki, Jackielee, Nichola and tatn: W...

2011-06-16T12:12:16.398-04:00

Response to Nikki, Jackielee, Nichola and tatn:

Well, I wanted to hear what people think and I certainly got what I asked for! I think I hear all your points of view. Regarding other kids who have 'recovered' from using the SRP: To my knowledge, there is no reporting of these kids in the literature. And there is nothing that refers to them on the ATC web-site. And yes, I did do my research. There is currently one study under way on the SRP and the results are not yet available. There is one unpublished qualitative case study of a family's perspective on a year's worth of SRP intervention with no clear results. If there are other research-based articles on Son-Rise, I haven't been able to find them in Autism, Focus on Autism and Developmental Disabilities, or the TASH journal, or Journal of Autism and Developmental Disabilities, I have watched SRP videos and I like what I see. I like the child-centered approach, the responsiveness to kids, but if a program has been around for so many years and there is no scientific evidence for it, then that raises red flags for me. Before the Boston Higashi School was established in Boston, there was considerable press about their 'cures' and 'making all kids speak', and these claims have proven to be untrue. I did research at Higashi and published it; I know. I was not 'throwing out' The Autism Treatment Center programs in my blog, just questioning the validity of the 'best autism treatment' vote. I also wasn't bashing it. I was just sayin'.....

I've read a lot about SRP and Bears and seen testimonials; I know that people love this approach. So then, what is the problem with researching it? We live in an evidence-based world, where medicine, education, social work, are all now required to use only evidence-based methods. Are you opposed to research on SRP? It really needs some. Insurance companies and school districts will not fund non-evidence-based methods. It is time to do the research and publish it.

As for taking a course in the SRP, I may at one time. Since I received my doctorate in 1982, I've taken many courses: in TEACCH, Facilitated Communication, Intercultural Treatments in Autism, Daily Life Therapy, have become certified in ABA and am now seeking a DIR/Floortime Certificate. I know the evidence is really against the effectiveness of FC, but I also know parents who swear it works for their kids, and I personally know some adults who use it for all communication, and it is wonderful. So, my experience belies the scientific evidence. I am a constant learner, and having taught at a University for 20 + years, i know that there is still so much for me to learn.

So, disagree with my blog, but don't make judgements about me as a person!

I just read your May 10th post, "Working with...

2011-06-14T13:41:41.146-04:00

I just read your May 10th post, "Working with the kids at their own level".
I found it ironic, considering in this post you are complaining that the Son-Rise Program won Best Autism Therapy Tool at the AutismOne Awards. Son-Rise was the first to do what you advocate in "Working with the kids at their own level". Indeed, though Floortime is a good teaching modality, it stops a bit short. The proof is that you felt "silly" cutting and raining pieces of paper. You are judging the experience. Try loving it!...find something fun about it...notice the sensation of the bits of paper tickling your skin as it rains down...notice colors and shapes that play in front of your eyes. Enjoy it! It is about basic friendship making skills...if someone that you know only goes through the motions of liking an activity that you like (example: playing chess, running, quilting, etc.), but another person that you know really enjoys the activity that you love, which person is more fun to do that activity with? For most people, it's the person that actually shares a love for that activity. That's the point! The person with whom you like doing the activity might then try to engage you in an additionally activity, that you might not typically want to do, but you'll likely try, because now that person is your friend. Here is a YouTube montage video that I posted last year. There are some Son-Rise playroom moments in it: http://www.youtube.com/watch?v=EM5y_HzdaUE I also posted a bunch of links in my above comment...I implore you to watch those videos as well.

I find this post ironic, considering your most rec...

2011-06-14T13:35:24.427-04:00

I find this post ironic, considering your most recent post was complaining that the Son-Rise Program won Best Autism Therapy Tool at the AutismOne Awards. Son-Rise was the first to do what you advocate in this post. Indeed, though Floortime is a good teaching modality, it stops a bit short. The proof is that you felt "silly" cutting and raining pieces of paper. You are judging the experience. Try loving it!...find something fun about it...notice the sensation of the bits of paper tickling your skin as it rains down...notice colors and shapes that play in front of your eyes. Enjoy it! It is about basic friendship making skills...if someone that you know only goes through the motions of liking an activity that you like (example: playing chess, running, quilting, etc.), but another person that you know really enjoys the activity that you love, which person is more fun to do that activity with? For most people, it's the person that actually shares a love for that activity. That's the point! The person with whom you like doing the activity might then try to engage you in an additionally activity, that you might not typically want to do, but you'll likely try, because now that person is your friend. Here is a YouTube montage video that I posted last year. There are some Son-Rise playroom moments in it: http://www.youtube.com/watch?v=EM5y_HzdaUE I also posted a bunch of links on your Son-Rise post...I implore you to watch those videos as well.

FYI, we have done equine therapy (horse therapy) f...

2011-06-13T18:35:47.383-04:00

FYI, we have done equine therapy (horse therapy) for years and incorporated Son-Rise techniques into to the therapy with much success...and there are many studies about equine therapy also. Something else to consider in the discussion is that autistic behaviors tend to be symptomatic of a cause or causes, often physiological. Thus, to discuss Autism without factoring in brain injury, toxin exposure, infection, food allergies and intolerances, etc. constitutes an incomplete discussion. I bring this up because you alluded to hyperbaric oxygen therapy in this post. Hyperbaric oxygen therapy has been used for many years for brain injury and a host of other conditions that have symptomatic behaviors take could be classified as autistic. Perhaps if you dropped your narrow definition of therapy to include those things demonstrated as therapeutic then you won't "flinch" so much and may learn something in the process that could be useful to your own life in the future.

You asked at the end of your post for your readers to say what they think. Well, I think I've been very clear on that. So, I will leave you with some links with which to educate yourself on Son-Rise, just in case you actually want to learn about it:
Raun Kaufman’s presentation of the principles of Son-Rise at the AutismOne Conference, http://www.autismtreatmentcenter.org/contents/getting_started/autism1.php
The Autism Treatment Center of America's YouTube Channel with techniques, learning and socialization games, testimonials, etc. http://www.youtube.com/user/autismtreatment
AUTISM: Full Recovery with The Son-Rise Program http://www.youtube.com/watch?v=swRBOlPKsX8
Jade's Son-Rise Program Journey: Autism Recovery Clip 1 http://www.youtube.com/watch?v=SC3LeEg_8TQ Jade's Son-Rise Program Journey: Autism Recovery Clip 2 http://www.youtube.com/watch?v=mbVEW5RO91g&NR=1
My blog post about our journey through Autism so far http://fetchitfido.com/waiwaihblog/?p=358

You said, "so far the only child to have been...

2011-06-13T18:33:38.163-04:00

You said, "so far the only child to have been 'recovered' by this method is Raun Kaufman"...seriously, you should have done some research before writing this post, because this is yet another erroneous statement. I personally know several Son-Rise children who have recovered. Just to be clear, the people at the Autism Treatment Center of America never said everyone will recover. They teach parents the techniques to facilitate their child's growth and development to that individual child's fullest potential.

Studies? Studies aren't the be all and end all for me because as my husband, the Johns Hopkins alumnus, has pointed out on many occasions, studies (regardless of topic) can be manipulated based on the preconceptions of those conducting said study. However if you want studies, there are studies of Son-Rise and of various techniques in Son-Rise. You just need to research a topic before you start writing a blog post about it.

You might not like the tone of this comment, but I'm trying to figure out if you have any genuine interest in learning about the subject or just want to bash it. My husband was the ultimate cynic, begrudgingly going along with my desire to take the Son-Rise Startup course...by lunch the first day, he stated to me that based on his knowledge of the brain's processes "This makes sense!", and by the second day, he was wanting to sign up for the advanced Son-Rise courses. Previous to Son-Rise, we spent 2.5 years following the tired old special needs approach, and our daughter was getting worse. Since Son-Rise, though she has not recovered, she grown and developed light years beyond where she was and her prognosis. Indeed, I saw your post yesterday, but didn't respond because I was tired after spending the day out with my daughter who was performing with her dance class at a local festival.

Continued in next comment...

This site will not let me post my comment as whole...

2011-06-13T18:31:47.146-04:00

This site will not let me post my comment as whole, so I will do it in parts. {Before I start my comment, since there have been references to a Nicole and Nicola in this, I just want to clarify that I'm someone different...it's ironic, as a child, I knew nobody with my name.}

Dear Susan,
If you're going to write a blog, I highly suggest that you educate yourself on the subject about which you are writing. Things change over time and innovations are made and accepted. The mere fact that you have been a practitioner since 1974 is not by itself enough to make you an authority on the subject...indeed, during your early years in the field, the accepted practice in the field of Autism was to use electroshock on kids. If fact the people who are closest to being actual experts on Autism are the people who never lose their intellectual curiosity and hunger for learning about the subject.

You asked, "Who were the people who voted?"...it appears that you didn't bother to read the Autism News article to which you linked, because it clearly states, "The voting included input from over 4,000 Autism professionals and parents from the USA and abroad." I voted in the various categories...I am an Autism mom, thus I live with Autism 24/7 and make the effort to study and stay up to date...additionally, my husband who studied the processes of the brain at a graduate level at Johns Hopkins University, also voted; both of us voted for Son-Rise. Now, do you really want the rest of the over 4000 voters to contact you with their credentials and for whom/what they voted? I think that might be cumbersome for your blog to handle.

You concluded with "And the catch-phrase from the Son-Rise Program is "To love is to be with"....what does that mean? Yes, love is important but these kids need to learn...." These kids are not the only ones who need to learn. First off, it's not the "catch-phrase from the Son-Rise Program", rather it's the name of a book about the Option Dialogue Process written by Barry Neil Kaufman. Of course, you wouldn't need to ask what it means, if you had only made the effort to educated yourself on the subject about which you have chosen to write. In regards to how "to love is to be a happy with" would pertain to Son-Rise, it means finding an attitude of peace when teaching a child. If someone is in a white knuckle panic that a child must learn a certain task by a certain time, that child is not receptive to learning. Hence, it is important to the learning. It is easier and more effective to teach a child who is willingly engaged with you...which is why I've met several teachers who have taken Son-Rise courses, then adapted Son-Rise to a classroom, having a more successful outcome than they had with their previous teaching modality (often ABA). Additionally, my husband who has been an educator for 20 years, finds this useful in facilitating the learning of his college students.

Continued in next comment...

Sorry Nicola, I wrote Nicole! :)

2011-06-13T16:54:28.691-04:00

Sorry Nicola, I wrote Nicole! :)

Maybe you should do a Son Rise course? Clearly you...

2011-06-13T16:49:47.657-04:00

Maybe you should do a Son Rise course? Clearly you did not think to research this program at all before you wrote this. The world does not need more ignorant blogs about autism. And you're "in the field"? You should know better than to comment on the viability of a therapy without knowing the ins and outs of it first.

2011-06-13T16:03:26.773-04:00

This comment has been removed by the author.

and may I just add, you said "these kids need...

2011-06-13T15:30:56.983-04:00

and may I just add, you said "these kids need to learn"... well what do you think A Son-rise programs does? Is ABA the only way kids can learn? I will give you credit in one way, you acknowledge these kids CAN learn! Which honestly is more then many professionals who believe otherwise. But this attitude is exactly why we just removed my child from public school. For years we have tried to make it work but always come back with the SAME problem, professionals who think they know better then us, and a narrow minded school program that is anything BUT child centered. The ability to learn and grow is exactly WHY we chose Son-Rise and therapeutic riding and a WHOLE bunch of NON scientifically proven therapies that you've dismissed as hog wash! :) But here is the good news, WE the parents have taken the power back, which is EXACTLY why SR was chosen for BEST Therapy! (yep, you wanted to know who decided that, well you can thank US granola parents!) And to ANY parents who read this blog and these comments. PLEASE OH PLEASE DO NOT wait until your child is 10 to try 'other' therapies when nothing else works! DON'T DO IT. DO ALL YOUR research, LEARN, and most importantly TALK TO other parents! At the end of the day YOU are responsible for YOUR child. If you find a treatment that you believe in and you've thought about it, prayed about it, read about it, then by ALL means go for it! Never ever ever stop looking for what works for your child, there are TOO many variables on this journey, and no time to waste. I ONLY wish I would have learned that lesson sooner! :)

Very Well said Nicole. Far too long so called &quo...

2011-06-13T15:15:52.072-04:00

Very Well said Nicole. Far too long so called "professionals" have dismissed ANYTHING but ABA. And after spending 18 months and $50,000 on ABA, I can tell you it is BY FAR not the ONLY method out there. Actually, we made more progress with 1 week of Son-Rise then the entire 18 months of ABA. Now, is that scientific? Well, excuse my language, but who the hell cares? I mean, if we are seeing progress and my child is happy then should I stop because science says otherwise? Science takes time to evolve and well, I do not have any more time to waste. we KNOW it works and thousands of parents agree. If we wait for science to catch up to what we already know a WHOLE lot of kids are going to be left behind. I mean there was a point in time when the science wasn't there to prove smoking caused lung cancer, though the belief certainly existed and ultimately proved to be correct!
I would suggest to step out of your professional box and listen to the parents. I have been failed time and time and time again from well meaning professionals, only to realize that my instinct was correct all along. I do not fault professionals for trying, I really don't, but the medical, educational and psychological community needs to understand this "you don't have ALL the answers, and you have a LOT to learn, instead of writing us off as nutty, out there granola parents, we would appreciate it if you would open your mind and hearts to what we as parents KNOW. It might be completely different then what you've been taught,but does that make it wrong?"
Nicole, you are so right, it would be nice to work together. Here is DFW I have a resource magazine for families living with special needs. It amazes me how much disconnect there is amongst the professionals who provide services to our community. Actually, one of our goals is to change that, so we've started networking functions and meet and greets for the therapist and doctors to meet and share their knowledge. At first EVERYONE was extremely hesitant, and quite resistant. Everyone thought THEIR way was the best and their was NO need to see what the others were doing. Funny thing is, here 2 years later the attitude has shifted, and NOT only are the therapist and doctors seeing the value of working together, our parents are thrilled! And now they are referring our families to each other, knowing that if they can't help, surly there is someone who can. When that attitude is embraced the CHILDREN WIN. Its NOT about us, it's about getting these kids the help they need.

Hi Susan, I just wanted to let you know that Raun...

2011-06-07T03:19:55.603-04:00

Hi Susan,

I just wanted to let you know that Raun Kaufman is not the only child to be 'recovered' , whatever that means, by the Son-Rise Program. Indeed, the Kaufmans granddaughter, adopted by Bryn (Raun's sister), was autistic and is no longer after her own 5 year program. I personally know several families with children no longer on the Spectrum at all after following a dedicated Son-Rise Program.

I also know many families with children who have not 'recovered' (may never), but have made fantastic progress, defying all "professional" expectations of them. However, the great benefit of Son-Rise is that the parents are given so many tools to thrive in life while parenting a child with significant challenges, even where there is little progress. That is where the phrase "to love is to be HAPPY with" comes from (you missed the HAPPY in your quote above). Son-Rise teaches parents that love and acceptance of what we have NOW is what makes for a great life. We can want more for our kids and set up a stimulating environment for them, but at the end of the day, we will love them no matter what and live wonderful lives because of what our children teach us.

Have you attended a program at the Autism Treatment Center of America? If not, I encourage you to spend a week at their Start-Up Program, so that you can speak of their methods from a place of knowledge. It is not for every family, but it is the best program I have found and I've searched the planet to find the best of the best for my son.

ABA had one flawed scientific study many years ago, in which children who did not make progress were left out of the latter stages of the study. Does that make it an OK therapy? I think some of the ideas behind ABA have value, but I personally don't place my kid learning a task above encouraging his motivation to be social. With Son-Rise we go for the social connection and THEN encourage learning. It works for us!

A major University study has recently investigated Son-Rise and I imagine the results are available, or soon will be. Does that then make it an acceptable program?

The autism world seems so divided. Why? Why can't we take the best parts from the various programs available? Why aren't parents encouraged to explore widely, so they can make informed decisions? For example, kids with sensory integration issues can benefit from HANDLE, while also having "food-as-medicine" therapy (gluten/casein/sugar etc free), while also participating in play-based social therapies such as Son-Rise, while also attending Social Skills Groups with other kids.

I really wish we could all work more collaboratively to the benefit of our children and the neurotypical world. Wouldn't that be great?

I have a blog post about why I love my job which pretty much sums up why I do it! :)

Hi Susan, I found you on LeadershipFreak. I love t...

2011-05-09T12:41:11.154-04:00

Hi Susan, I found you on LeadershipFreak. I love the varieties of people you find on LF!! You may be well familiar with this blogger but if you aren't I highly recommend Diary of a Mom (www.adiaryofamom.wordpress.com). Read just one post and you'll understand why!

Sometimes, I do believe that even our autistic chi...

2011-04-13T10:48:41.865-04:00

Sometimes, I do believe that even our autistic children need to be taught that it is unacceptable to have these kinds of outbursts. My daughter doesn't have many these days but she still does get very emotionally charged and lashes out. As they see the world from a different angle, reasoning and talking about the situation needs to be approached at their level, not from an adult POV. Perhaps these meltdowns can be turned into something fun, like a game, to be played once the child has calmed down. I don't know if putting the child into a padded time-out room does any good apart from allowing him/her to feel isolated and even more different from the world than they feel already.

Just my thoughts, hope I haven't spoken out of term.
CJ xx

Hi Ang, I was troubled myself writing this post, ...

2011-02-06T14:44:28.288-05:00

Hi Ang,

I was troubled myself writing this post, because I did not want to appear as critical of parents. But so many of the parents of kids I work with, for whatever reasons, do not engage their kids at home. I know there's a lot involved with poverty, education (or lack of it), difficulty in maintaining a daily structure ( there are many parents of all kids who struggle with this!), an over-reliance on screen time (considered by many to be educational), or just being overwhelmed by it all. And I think it is obvious that parents who blog have a commitment to their children. And I also agree that kids on the spectrum deserve time alone to wind down...but the key to their progress is keeping them happily engaged. And when you do this well, a child will return for more engagement, because it is fun, he is understood, accepted, loved and supported! BUt I use this blog as a way to begin to communicate my perspective on the work I do. So thanks for your comment, and I will continue to read Peach Coglo!

Thanks for stopping by my space the other day. So...

2011-02-02T16:04:11.659-05:00

Thanks for stopping by my space the other day. Sometimes I think it is just really difficult for some parents to understand how much their child needs or maybe if they do they are overwhelmed. Many days Doran comes home from school and needs to stim for a few minutes to wind down. Sometimes we can get him to do homework, sometimes not. He is sounding out words now, something people say kids with autism can't do. I do let him watch Electric Company and Cyberchase because he enjoys the cartoons, the humor, math and reading. It's so visual and that is good because that is how he learns. However, we do take him to museums, read, swim, listen to music, play and do art with him. Sometimes he truly does not want us to bother him so we let him be. He comes back to us pretty readily and he also engages/plays with his siblings more and more. I don't know the answer except I do know that there are some parents for whatever reason who allow their kids to float completely.
Thank you for hosting this blog!
Peace, Angela (Peach Coglo)

Mary, I agree. We just don't know what those v...

2011-02-01T17:20:38.284-05:00

Mary, I agree. We just don't know what those various circumstances are for particular children!

Children normal behaviors depend on various natura...

2011-02-01T02:47:46.872-05:00

Children normal behaviors depend on various natural and environmental circumstances in which a child grow and observes the way for his best possible conduct within his reach and interact amongst those who respond his gestures and body talks.

What a wonderful voice/writer. Thanks, Sue, I'...

2011-01-17T09:16:11.212-05:00

What a wonderful voice/writer. Thanks, Sue, I've added Erika's log to my Reader. xo