Journal Exercise 4.7: Autobiographical Incident 7-11-14
Note: Timothy Ryan is an adult with autism who uses Rapid Prompt to write and communicate. This is one of his journal entries and we thank him for sharing. He has a wry sense of humor (note the ending) and keen insight. Not being able to communicate typically does NOT mean having nothing to say. We are always happy to bring you posts not just about - but BY - people with autism. Thank you, Tim.
By Timothy Ryan
The Disney Park was hot, steamy, muggy, and smelly. My family and I were waiting for the Splash Mountain ride. I felt sick. My body was on fire from the inside out. My head was going to explode. I couldn’t talk and describe the agony. That was only the beginning of my ordeal. The airplane would prove to be my greatest challenge thus far. Little did I know everything would go askew.
The airplane was cramped, dirty, noisy, and uncomfortable. Cigarette smoke lingered in the cabin. I became sick, nauseous, and disoriented. Passengers were staring at me with ugly faces. It felt like I was on display at the museum. Dad was aware of my discomfort due to relentless pummeling from my fists. Mom was mortified by my seemingly irrational behavior. My brother Mark slinked down in his seat not saying a word. The flight attendant roamed up and down the aisles glaring in my direction, her arms on her hips with eyes bugging out.
I felt as if my body was breaking down like an old used car. It hurt to breathe, think, talk, and be around people. People make it impossible for me to interact. They speak too rapidly and don’t wait for me to respond. If only they would notice how I am trying to fit in and be more typical. It would help if people made an effort to get to know me. I am suffering from an illness that robs me from establishing relationships. I can feel rejection. It hurts to see others move forward while I remain trapped in my inner world. It is not my choice to be disabled and dependent upon people.
I was misunderstood in the airport and on the airplane. No one felt compassion for me and my disability. I started to assault random passengers as they sat buckled in for the flight many of which had food that was poison for me. The odors wafted up to my brain causing rage that manifested as hitting heads like a bowling ball knocking down pins. I had no resistance to my impulses. They came mean and ferociously like a pack of wild dogs on a hunt for prey. I must follow through with violence or I will die from anxiety. That makes me a psychological cripple that prevents my development as a functioning member of society.
What happened next is hilarious. I noticed a kid who sat near the cockpit with similar issues as myself laughing at me while I kept bopping heads. He gave me a smile that made it bearable for me to continue and manage my feelings that were overloaded like a bubbling volcano. He showed an understanding that was beyond most people. He didn’t intend to be cruel. He was showing support and solidarity for my plight. What happened next, I had no idea if I would be arrested, handcuffed, or restrained. I felt hopeless, scared, and disconsolate. Who would save me from the consequences of my behavior? This bothered me more than rude stares and comments from the flight attendant and passengers.
Finally I felt relief that the plane was landing. I could sense a drop in elevation by the weird awful sensation of my stomach up in my chest. The Captain announced,”Get ready to land, fasten seatbelts.” I became calmer and focused on the thought I would be home soon safe from criticism and ridicule. Many passengers were relieved. When the plane landed the flight attendant announced,”We have a special passenger who needs to deboard first.” I was furious that I was pointed out. I would have preferred her to be discreet and just released us from the plane without drawing unnecessary attention to us. She could have made the announcement after we left. As it was I felt humiliated and patronized. I wanted so much to apologize for my outburst and violence. I regret not controlling my impulses. Next time I will drink a martini or smoke some weed.
--
Tim is currently 21 years old. Up until 17, Tim was effectively non-communicative. At 17 his mother started teaching him using the Rapid Prompt Method (RPM). RPM is a method of teaching that allows the learner a way to express their learning, understanding, reasoning, and thoughts. RPM, although difficult at first and time consuming, eventually opened up Tim’s world to us through his spelling on a letter board.
He has spelled for us that he has been hurt by the way others have treated him over the years. One incident that stands out for him was when he was 6 and the director of a special education school he attended told the principal of the school that he was unteachable - right in front of him. He has spelled for us that he has understood everything that has ever been said around or to him.
He was asked to leave this school at 15 because of his behaviors. In hindsight, this was the best thing that happened to him, strict ABA was driving him crazy. He was unable to speak and physically do what was asked, preventing him from progressing beyond 1st grade academics. Any verbal response was unreliable and still is today. Tim is home schooled, enrolled in an online High School.
Eileen and Jeanette_I have worked with over 100 families and I have never made a disparaging remark to any of them. Somehow, you two brought it out of me. HOW DARE YOU! How dare you put your child through this because you refuse to see the brilliance in them. Why do you think they don't understand you? Because they don't look at you? Because they don't speak? Poor kids, that's just really sad that you say, "I'm not buying it" and the like. I think that you are like the moms who say the diet doesn't work. Yeah, if you're TOO LAZY to follow through with interventions, it won't work. That's just sick, your poor kids are trapped inside their own body and all you can do is tell yourself that the child isn't in there to ease your own conscience. SICK!
Posted by: Sarah | September 02, 2014 at 01:24 PM
Tim's dad_ I fully support you and thank you for sharing this story. Thank you for letting me into his world!Sarah
Posted by: Sarah | September 02, 2014 at 01:17 PM
We have a 11-year old severely autistic son. Something that has helped our son not injure himself is realizing that he would hurt his head when his head hurt as he would tell us on his Touch Chat app that I customized. Then talking to my Mom who said that she got migraines from certain fruits. Our children have struggled with severe and many allergies. Then getting him IgE blood tested which is more sensitive than skin tests, which revealed many, many food allergies; also he has many environmental allergies. I came to realize that the allergies were causing neurological inflammation throughout his body, resulting in migraine headaches, itching, eczema, allergic rhinitis. Also, I realized he had overgrowth of yeast issues, as this all relates back to compromised gut. Helpful books were Intestinal Health through Diet by Elaine Gottschall, and books by Dr. Kartzinel and Jenny McCarthy and Dr. Kenneth Bock.
Posted by: Lori M. | August 28, 2014 at 11:53 AM
@mary m maxwell-my child can spell, read AND type yet we don't see him having any breakthrough using extensive flowery language while typing telling us about the world in detail. It's a little suspicious these kids only do this once Soma gets a hold of them. Maybe for some this works but for those who have auditory processing disorder, apraxia and other severe deficits I find it very hard to believe they are suddenly going to be using perfect grammar and perfect sentences to communicate.
Additionally, if this woman is such a miracle worker why haven't SLP's and others in the industry studied this method extensively? Where are the scientific studies showing her success?
Posted by: ?? | August 26, 2014 at 08:07 AM
To Donna K,
I may have to lose the 5 dollars, but please consider this statement from Carly Fleischman, now age 19. She was asked by a parent, “Why does my kid suddenly laugh or cry when nothing has provoked it?” Carly replied that it may take an autistic person up to 24 hours to do ‘auditory processing.’ Thus, the child’s laugh on Tuesday may reflect a joke he heard on Monday!
Which of us would ever have imagined that this factor exists? (Thank you, Carly!) Couldn’t it explain why a child, ‘in real time,’ appears not to comprehend language?
As for aloofness, you’ve got to read “Ido in Autismland.” Ido reveals himself as caring deeply. Yet if we were to judge him by his apparent behavior, rather than by his narrative, we would probably, mistakenly, accuse him of aloofness. (Similarly, how many people on Tim Ryan’s plane ride knew that he wanted to apologize?)
One more thing that jeopardizes my bet. Anybody would think that an autistic person who hears and comprehends (even on a delayed basis) could get around her lack of speaking ability by using some form of charades, or exaggerated facial expressions, to convey to her Mom what she wants to say. I admit I don’t understand why Carly, Ido, and the others were incapable of doing this. But they definitely WERE incapable.
Carly’s father was astounded to find out how much she had been ‘on board’ all those years when she was unable to give any indication of awareness. It’s a mystery. Somebody should research this.
By the way, Carly’s breakthrough (via typing), at age 10, came not from Soma but from her home aides, Howie and Barb. Once Carly knew what spelling was all about, she spontaneously typed. Perhaps humans need to be involved in ‘making words’ in order to formulate their thoughts and plans? (“No wordsies, no thinkies.”) I float that only as a possibility; it goes against what I have always believed.
Posted by: mary w maxwell | August 25, 2014 at 05:52 PM
Donna K, thanks for your comments.
Most people are aware that people with Broca’s aphasia (first described in 1861) have difficulty putting their thoughts into coherent speech. People with Wernicke’s aphasia (first described in 1874) are fluent but seem nonsensical in speaking. Maturation of Broca’s and Wernicke’s language areas of the brain progresses most rapidly from birth through the first half decade of life (neonatal to age 5). This has been known since the 1930s based on investigation of myelin formation in the brain.
Most people are aware that teratogenic factors (prenatal infections or exposures to toxic substances) disrupt normal stages of maturation. Development of all organs, limbs, and the brain follow an orderly course, which if disrupted leads to deformities and abnormalities. Prenatal use of drugs like thalidomide and valproic acid is clearly dangerous. No prenatal exposures can be counted upon to be completely safe. Likewise, during the first 5 years of life, factors that cause even “minimal” damage to the brain cannot be brushed off.
The experiments on asphyxia at birth led to “minimal” damage in the brainstem auditory pathway. Back in the 1960s and 70s parents were told that “neural plasticity” would correct problems associated with “minimal cerebral dysfunction” (MCD), but all kinds of “patterning” exercises were promoted for children with MCD. Now autism has surpassed cases of MCD, probably because of all of the “safe” prenatal and neonatal treatments children are subjected to.
Maturation of both Broca’s and Wernicke’s language areas depends upon intact developmental signaling from neuron axons that originate in nuclei of the auditory pathway. These are the auditory centers most vulnerable to injury from asphyxia, valproic acid, mercury, lead, bilirubin, antibiotics, and who knows what other environmental junk? If Broca’s area is left short-circuited, speech apraxia will be the result. If Wernicke’s area fails to develop normally, the child may speak, but fail to hear syllable and word boundaries. These are children who use phrase fragments rather words in beginning to speak.
Yes, RPM should be tried with children whose problem is primarily apraxia, and I suggested yesterday somewhere on AoA that the IACC should fund research on RPM, and let’s get the research started by asking them to fund RPM for all non-verbal children.
Posted by: Eileen Nicole Simon | August 25, 2014 at 07:42 AM
The statement was made, "The autistic brain is not blocked from hearing, or from understanding language. I’ll bet five dollars every autistic child understands the language spoken in his household."
I believe that most children with autism that I have encountered "hear" but I know without a doubt that they don't all comprehend language. My daughter, who lost the ability to speak AND comprehend language during her second year of life and is considered severely affected (though having made some notable progress with communicating since going through puberty four years ago) still has great difficulty even articulating sounds and comprehending the meaning of words much less language. I know she can hear sounds that are barely audible, but that doesn't mean she can make sense of what she is hearing. She relies more on visual communication. She is bright, has a memory like an elephant, but has a significant communication/comprehension deficit that keeps her from developing mentally and understanding how the world works. Though Tim has an autism diagnosis, it is a very different expression of the autism diagnosis my daughter has.
As the parent of a teenager who has an ASD diagnosis, upon reading a journal entry such as this, I have to admit my first reaction is one of not only skepticism, but disbelief. But then I have to remind myself that there can be those with high functioning autism who though are non-verbal, are not afflicted with some kind of physiological damage that interferes with auditory processing and communication like my child suffered. Eileen Nicole Simon's extensive research in the area of auditory pathway physiology and pathology can help explain the difference between those for whom RPM is not a viable therapy and those who on the other hand have the auditory physiological ability to use RPM to bridge the communication alienation they suffer. I read that Soma identifies children/adults with ASD who have significant self-stimulatory behaviors and difficulty staying focused as those who seem to be more likely to benefit from RPM. The demand for staying focused through constant, unabated prompting seems to me to be the effective component of RPM, accompanied by motor planning training. I have often thought that some forms of autism come across as extreme expressions of attention deficit disorder but lacking adequate verbal skills. Inability to coordinate motor skills to articulate verbally could explain the lack of verbal skills but allow that speech and language comprehension remain intact.
Even though at the core of the diagnosis of autism is the communication deficit, lack of verbal skills isn't even the defining characteristic of autism. It can complicate the communication issue in autism, but I believe the defining characteristic of autism is in the “social aloofness” along with the inability to recognize the nuances inherent in social dynamics among those we interact with whether directly or indirectly.
Posted by: Donna K | August 25, 2014 at 12:43 AM
To Amy,
Clever Hans, the horse, was asked to add 2 and 2. He said “4” by tapping his foot four times. We assume the audience showed tension that he would go on and do a 5th tap, and this ‘facilitated communication’ from the audience made him stop at the correct answer.
Where is the analogy to Tim Ryan? His essay is 665 words. At an average of 5 letters per word, that is 3325 letters. Did his Mom raise her eyebrow or clench her teeth 3325 times so he would pick the letter she wanted? Wait -- it’s worse than that! She would need 26 different signals for the alphabet, where Hans needed only two -- a yes or no.
What about Tim’s story of the boy near the cockpit, probably a comrade in autism, who smiled in a way that showed solidarity? Do you think Tim’s Mom made that up?
I don’t think we need to have witnessed Clever Hans to realize that he couldn’t have added 2 and 2. Equine species just don’t have a brain to support arithmetic. But humans have such a fabulous language-brain that you can’t stop ’em. All babies babble before age 2, and pretty soon they master all the rules of their language (okay, maybe not the split infinitive). They don’t need to be TAUGHT any of this.
Soma’s graduates, such as Ido, report that they never failed to hear people talking around them. Why would they? The autistic brain is not blocked from hearing, or from understanding language. I’ll bet five dollars every autistic child understands the language spoken in his household. Elizabeth Bonker’s mother, Virginia Breen, says that as soon as Elizabeth got the key to writing, from Soma, she letter-boarded “What is FEMA?” and “Who is Hamas?” So she must have been thinking about such matters all along.
And she was only in First Grade at the time!
Posted by: mary w maxwell | August 24, 2014 at 03:52 PM
To all the arm chair psychiatrists,
There is a time and an place for everything.
This isn't it.
Posted by: Linda1 | August 24, 2014 at 08:43 AM
Dear Timothy Ryan,
Your essay contains quite a revealing item. You say that when the landing announcement was made (which is usually 30 minutes before de-boarding), you were able to overcome your misery, by looking forward to the fact that the plane ride was ending. Wow! What does that say about your “impulses like a pack of wild dogs”? It says that you can be at the helm by merely taking thought. You no longer felt like hitting anyone. A simple change of outlook made the rest of the trip OK.
In “Ido in Autismland,” young Mr Kedar reveals something similar. He says when the ‘experts’ came to his home to watch him point to the letter-board [he uses the word ‘experts’ sarcastically to mean ABA folks who don’t have a clue], he couldn’t make a decent showing. Whether due to anger, apprehension, frustration, whatever, his skill at the letter-board went up in smoke. But if people he trusted came to the house he could perform like a dream.
Did those two sets of persons control Ido’s ability? Nope. He controlled it himself. He “let the bastards get him down,” as my husband used to say. I readily admit that most of us, most of the time, let the bastards get us down. (I seem to be doing it obsessively lately, and I am fully NT.) Clearly, the solution can’t consist of removing all bastardry from the universe! It must be to take control, be at the helm, develop some ’tude. If the bastards get you all riled up, it’s your job to un-rile yourself.
The people on the plane were not staring at you personally (as you probably know). They were on the lookout for trouble, and you would do the same in their shoes. It’s an evolutionary strategy, and unlikely to change in the next thousand years. If you choose to make a federal case of it, fine, but that may increase your pain. Remember, there’s only one person in control here!
As for your comment about martinis and weed, yes, they do quell anxiety. But I’d urge you not to use substances at this point. They may bring new complications. It would be more economical for you to get some steely resolve about not playing victim. Judging from your essay I think you can do it.
Try this. Say to yourself: “I am not a victim. I am NOT a victim. Plenty of folks honor me and sympathize with me. Holy frig, I’m not a victim!”
Posted by: mary w maxwell | August 24, 2014 at 08:12 AM
I speak as another parent - my son has autism and is non verbal apart from a few words. We first saw Soma in 2011 and since then have worked hard with my son to develop his independent pointing ability - beginning with 2 choices, then progressing to the alphabet . Working on this skill has empowered him to be able to express his learning, thoughts and opinions. He has been like a sponge all these years - absorbing information but unable to initiate the motor planning movements which would enable him to demonstrate this. I have three other people who work with him - and yes he is regularly able to tell them things which I have not told them. We are still working to full independence - he still needs lots of verbal encouragement to 'keep going',' move your arm', etc - but we do not guide him to any letters or physically hold/touch his arm. Everyone is entitled to their opinion - mine is that autistic people are totally underestimated in terms of their intelligence/cognitive ability - RPM is no magic bullet - it can take a long time to learn , particularly where a person has severe motor challenges , but it is deeply respectful and provides a way to enable theses people to show their intelligence.
Posted by: Sue Finnes | August 24, 2014 at 07:10 AM
Tim, thank you so much for telling your story. It helps me understand my son's rages, and will allow me to support him more fully during his times for distress. You are very kind to do this.
Posted by: Wrless1 | August 24, 2014 at 04:51 AM
I remain appalled at the vitriol throughout the autism community. You would think that since all of us have loved ones affected by this condition, we would learn to be supportive of each other rather than judgemental and hateful.
Tim, thank you for speaking out....and Theresa (mom), thank you for your perseverance in helping Tim find his voice and show the world that he has a great intellect trapped in an uncooperative body.
Posted by: Peg Pickering | August 23, 2014 at 08:52 PM
I, too, am a parent who has taken my son to see Soma. My non-verbal son showed me he has been listening and learning on spite of all the ABA professionals. Ido's book, ido in autismland, helped me to understand my own son more than anything I'd ever read. Parents, once you see your kid respond.....you will be amazed.
Hands down the best thing I ever did for my son.
Posted by: E. Callahan | August 23, 2014 at 08:34 PM
There is a significant difference between speech and language. Speech is the physical production of sound via movement of the fine muscles and structures of the articulators to the form of phonemes (speech sounds) that we combine to form words. In other words, SPEECH is a MOTOR based action. Put simply, language is the underlying cognitive ruled-based system for understanding and expressing thoughts and ideas via words and sentences. There are many autistic people who are fully "verbal" - they communicate perfectly structured and grammatically correct language via speech. No one doubts their vocabulary, thoughts and ideas when these individuals articulate their ideas via their mouths. For many nonspeaking individuals with autism, their SPEECH is affected by issues of motor control and planning (often referred to as apraxia or dyspraxia). Since LANGUAGE and SPEECH are two separate functions, the assumption that because one cannot physically produce speech sounds that this individual is also incapable of language is faulty. Why is it possible to believe that individuals with cerebral palsy who cannot control their motor can communicate via spelling with a head pointer or other device, yet reject the premise that an autistic individual with motor planning issues cannot express himself via spelling? RPM allows one to bypass speech and access language by spelling (which is a language based function) by pointing to letters on a letter board or keyboard. These are facts about speech and language. This is not based on a quick internet search or opinion but upon science, anatomy and physiology. I am not stating this based upon opinion or hunch but on 19 years as a Speech-Language Pathologist, 12 years as a professor of Speech and Language and Education at George Washington University, an Education Specialist and an RPM practitioner. Before making judgements about the validity of RPM and the veracity of Tim’s words, consider the facts. We have much to learn autism. I believe that nonspeaking autistics have a something to teach us. Perhaps it is time to listen.
Posted by: Elizabeth Vosseller | August 23, 2014 at 07:41 PM
For the skeptics please read Ido in autism land ,Carly's voice or come and chat to my son who learned to type at 18 years , and has completely blown me away with his knowledge .he can now type sitting at a table no one holds his iPad but it takes him a long time to type one word , huge effort and concentration , .please remember you do not know everything an open mind is a wise mind
Posted by: Nicola Brady | August 23, 2014 at 06:05 PM
I understand the skepticism. I also was very skeptical while researching RPM in 2009. My son is non verbal. Typical regressive autism-- talked until he regressed at age 2.5. Lost speech, lost connectivity, lost playfulness. Diagnosed at age 3. We have done many therapies for him over the years, some worked, some didn't. Most were small improvements, but improvements none the less. But he still wasn't talking. He is a sweet, smart , funny guy who loves us and is happy most of the time- but couldn't express himself so would melt down, or act out when frustrated. So in 2009 when he was 12, we made the appt to go to one of somas camps. I almost cancelled it three times because I hated to ' throw away' more money and it would probably not work, or worse yet, we'd get there and I'd see that it was not real. That she was somehow guiding them. But we went. And I thank God every day for that week of camp. I knew my son was in there and I was right. He is way smarter than I ever thought. He is so aware and wants so badly to ' emerge' from his autism. He not only has done RPM for Soma, but also a teacher he had at school, and myself. He does it independently without any prompting. I am so glad Tim has his voice as well!! Soma deserves a Nobel Prize. Not all this doubt and criticism. These kids are not mentally retarded. They are like sponges soaking up everything around them when we don't even realize they are listening. They can't speak, so their other senses are heightened. RPM is not facilitated communication. Not even close. You don't touch them. You don't guide them. They are completely independent in their thoughts. Best thing we ever did. EVER.
Posted by: Maranie Adams | August 23, 2014 at 04:24 PM
I am Tim’s father. I would just like to clarify a few items surrounding Timothy’s story.
When we submitted the story to Age of Autism we indicated in the introduction that this trip took place 6 or so years ago when he was much younger and smaller.
In Tim’s descriptions, he does make it sound as if he assaulted the whole plane. On the plane there were two incidents, once when we were walking back from the bathroom and once during the chaos of leaving the plane. I agree that two times is two too many. As his parent even though he was small and they were slaps more than anything else, you do cringe and can only apologize for your son’s behavior. He did give me a problem during most of the flight and as most parents with children like Timothy we vacillated between feeling so sorry for him and complete frustration in trying to control him when he is obviously not himself. What was most disappointing for us about his story was that he wrote about a terrible event instead of a happy event in his life.
This may have been a form of therapy for him. Remember this is his writings and we did not want to change anything. We did think twice about submitting his story. He did portray himself and the family in a negative light, as if we allowed him to roam the plane assaulting passengers.
Regarding the comments of disbelief, we too can not believe our sons abilities. With all that we don’t understand regarding our son in this world of Autism, for once we have something to put in the positive column.
Regarding RPM, we can not say enough praise. When he is up all night, we can ask him why he was up. He can tell us the reason allowing us to make his life easier. For the first time he is a participant in managing his own health issues. On Dr visits’ he now spells in front of them he wants to speak, has pain every day and anxiety. The look on the faces of these Drs was priceless the first time. Now they treat him like the intelligent adult he is.
When people say autism, you have really no idea what the person is like since it’s such a broad spectrum. You can be talking about someone like the character in the Big Bang Theory TV show or you can be talking about an individual who is non verbal self stims and rocks back and forth all day. Our son is one who is non verbal and wants to stim all day. Now he likes to learn age appropriate academics and material beyond. He likes to write even though it is still very difficult for him. During allergy season his health issues get worse and he may write less. On good days he may write 2 paragraphs of open communication. His writings may be a form of therapy for him. Thank God he has a sense of humor.
But the greatest benefit, and probably because this is still new to us is the communication of everyday events and choices that he now participates in. Remember Tim was effectively non-verbal, even for yes or no questions his verbal response was not always accurate for what he wanted.
Right after this trip we brought Timothy to an Immunologist who specialized in treating children with allergies and behavioral symptoms. We found through testing Timothy was highly allergic to mold, Ragweed, foods and everything else. The Dr told us that the allergens contributed to his negative behavior on the flight home.
After living in this world of autism for 20 years, spending thousands of dollars on interventions and therapies, I hate to recommend anything to anyone but if your child sounds like Timothy, you have nothing to lose and everything to gain by trying RPM.
I have nothing to gain here and would have preferred to stay anonymous.
Posted by: Chris Ryan | August 23, 2014 at 02:20 PM
I came across this comment in an article regarding Soma and her therapy (it does seem like just another form of FC).
Found it level headed and noteworthy.
"I've been researching this therapy a bit, as the media hype makes it sound so promising. I found some surprisingly big question marks in the whole theory, though, and am very surprised these haven't been noted more:
1. According to the most recent articles I could find, neither Dov nor Tito can perform this communication without their mothers present. I'm afraid this smells like facilitated communication to me, and no matter that no one is touching them physically. As I believe you have mentioned elsewhere on your blog, one only has to look at the stories of dogs and horses who have been taught to "type" full sentences and "do math" without anyone touching them to know that it's quite possible to cue people in other ways.
2. For most of the students, other that Tito, the method looks a lot more like blatant facilitatated communication. Sure, no one is touching them, but they are holding the letter board in the air and moving it around, making manipulation easy and possible.
3. How is it that these students had years of ABA and other teaching, and none of these skills were apparent? Even if they couldn't talk, surely they had many opportunities to demonstrate receptive knowledge. Why couldn't they couldn't show their vast knowledge by at least identifying site words or a large range of vocabulary during these other sessions? The Rapid Response Teaching Method is not so wildly different from a typical ABA session. And even if it was, how is it that NONE of this depth of knowledge came out during receptive tasks earlier on?
4. Why weren't / aren't these thought processes apparent via the child's actions? Parents tend to say the sudden communication came as a complete an utter surprise, they were learning things they never could have dreamed about their child. So why wasn't the child acting on these ideas? A quick internet search shows Dov "writing" about gardening with his mom, and another child proclaiming her lifelong desire to take dance classes. Why wasn't Dov out in the garden, trying to plant seeds and acting on these supposed interests? Why weren't things like favorite colors and classes the child wanted to take easily apparent via the child showing an interest in those things before writing about them? The writing seems to occur in a void, isolated from the child's actual actions.
5. The children's first statements typically never seem to consist of delayed speech, the type you might see in even very high functioning children with autism. Typically the children who were thought to be the "lowest functioning" instantly surpass even the highest functioning children on the spectrum, and most of their typical peers. Their speech is lyrical, poetic, thoughtful, and philosophical. Dov's first response, when asked what he had been doing all these years, was "listening". I'm sorry to say it, I know the parents must be desperate to hear these statements, but that is straight off a Hallmark card, not something any 9-year-old says.
So I'm sorry to say, while this therapy initially looked a bit different, at this point I'm inclined to think it may be a newer, more complex take on facilitated communication.
Another thought I want to add, just as a point of interest. I notice that there is a trend in these stories of seeing the label of "mentally retarded" as "giving up on the child", stupid, ignorant, uninformed, and in general just an evil thing to say. Any and all references to children being diagnosed as mentally retarded are in reference to cruel, uninformed professionals who were somehow calling the child worthless with this label. Almost all of the stories involving this method seem to begin this way.
I would like to say here - mentally retarded is a diagnostic label, indicating cognitive delay (i.e., retardation.) It is not an insult, it is not the doctor calling your child worthless, hopeless, or unworthy. Yes, due to various factors, this diagnosis can be made in error, as can many other diagnoses, but I found a trend of saying any professional who says your child has a cognitive delay is an evil jerk who doesn't believe in him because he can't see his true genius."
Posted by: Amy | August 23, 2014 at 11:51 AM
ON BEING SCRAPED OFF THE FLOOR WITH A SPATULA
I watched the miraculous Soma in action at the 2014 AutismOne Conference, and have read books by three of her pupils, including the tellingly-entitled book “I Am in Here” by Elizabeth Bonker.
Sure everyone is welcome to be skeptical but after you meet these lovely people your skepticism will come to an end.
I just popped over to Soma’s website and found numerous testimonials of which this one by a mother seems to say it all:
“As I write these words, I am sitting in a hotel room in Austin, and my eyes are swollen from thankful tears. Yesterday, my son spent his first day with Soma at the HALO clinic. Even after months of moving towards educating my son through RPM, I could have been scraped off of the floor with a spatula as I watched Soma prove beyond a shadow of a doubt that my son is completely capable of learning grade level material.
Meet my son, David. He owes his suddenly full, abundant life to Tito, and to Soma.”
Posted by: mary w maxwell | August 23, 2014 at 08:53 AM
The bigger question is why someone who assaults people at airports, someone with little self control or concern for others, was not being supervised so as to protect innocent bystanders. Why would you take someone who is physically violent and cannot control his outbursts to Disney World? The assaulted bystanders would have a legal cause of action. Sorry, I'm in compassion overload but honestly, it really just does not extend enough to cover this situation, and I really don't think it should.
Annie Sidner,
Where did I requst his medical records? Why do you think I would want to see them? Why do you consider this mental brilliance? Several of us here expressed scepticism of this account, and that is our right. Why do you want to silence us? My indecency? His exceptional mind? Because he's able to verbalize that if he doesn't follow through with his impulses to violence, assaulting seated passengers, that he will feel very anxious? The passengers are just supposed to submit to being assaulted, and say, Oh, he's covered by the Americans with Disabilities Act? Well, that explains and excuses everything. Never mind! Are you saying that rights are only for the autistic? I have the impression that several commenters here are selling something.
Cailin,
When you say you are his teacher for two years, did you mean that you have been his teacher for two years, or that you will be his teacher for two years? What are you teaching him?
Posted by: cia parker | August 22, 2014 at 07:07 PM
Tim, thankyou - thankyou. We will remember your voice and words as long as we keep fighting against the cause of autism, in the hopes that somehow we can prevent some cases.
Each year when I visit California, I am surprised to go to my grandsons music concert at his school and see that they have put some poor autistic kids with sensitivity to sound on one side of the group of kids. It may make adults feel good that they are making the kids "act" normal, but the kids look miserable, and I am surprised that no one has told the adults how distressing and painful this is for the kids.
Keep writing Tim !
Posted by: Cherry Sperlin Misra | August 22, 2014 at 01:58 PM
Linda1; first you are right, I missed the sentence where Tim said he regretted his violence. Apologies, Tim.
You are right, people with autism may not automatically understand that even apparently neurotypical people may have issues flying planes, that the person they hit may have been the victim of domestic violence and hitting them again may trigger PTSD, or even just that the people they hit may be in pain for a long time after being hit. But it is something that I think is important to tell them. Most people with social deficits have no intention of harming or causing pain to others, so helping them realize what the effects of their actions are can be useful for them in understanding other people, and in developing their own compassion.
Simone; has your son ever taken a test whereby he was given information that was different from what the assistant thought was the right answer, and he correctly produced the answer he knew was right?
A result like that would be very impressive.
While many children with autism are far more intelligent than they are given credit for, I don't think that all kids can necessarily be fluent college level writers.
Truth though, if I had a completely non verbal son, and I was worried about his future, I might not look to hard into verifying something like this , based on the fact that even if the communication was not real, at least people might treat him better if they thought he could communicate at that level.
Like Cia, having a child who finds speech hard, but can speak, and who can write independently, but poorly , does suggest that not all children will be able to do this..
Posted by: Hera | August 22, 2014 at 11:03 AM
Impairment (if not damage) within the brain is the cause of autism for severely effected children. Treatment and prevention will only be possible when the underlying brain disorder is understood. Many different problems are associated with the brain impairment. Prenatal rubella infection, exposure to valproic acid and other substances during gestation, oxygen insufficiency at birth, plus many different genetic conditions like tuberous sclerosis, neurofibromatosis, PKU, and more are associated with autism.
Prenatal exposure to valproic acid causes damage in the brainstem auditory pathway, as does asphyxia at birth. Nuclei in the auditory pathway have higher aerobic metabolism than any other area of the brain, which is why they are vulnerable to damage from all of autism’s causes. Children learn to speak by ear, and maturation of the language areas of the cortex depends upon intact function of the underlying auditory system.
Research requires understanding perinatal and genetic factors. Without this information, case reports of recovery are “anecdotal” and await more in depth investigation of many similar cases, in which subjects remain anonymous. I remain skeptical. In the same way, I remain skeptical of claims that vaccines are safe without solid evidence that they do not harm the brain.
Posted by: Eileen Nicole Simon | August 22, 2014 at 10:34 AM
"It is not only Tim and my son but most likely all non-verbal autistic population who can do way more than we believe."
School reformers John Holt and John Taylor Gatto both have said that all children absorb, that human learning is automatic, that children should be given an enriched environment in which they can thrive and learn what they need to learn rather than to be force fed and that the failures and difficulties in modern methods of schooling are not due to children's lack of ability, but due to the destructive nature of the schooling itself. Holt and Gatto also said that human genius is common but destroyed by schooling. It is said that birds fly, fish swim and humans learn.
Though autistic, what Tim has demonstrated in learning language and spelling is probably true of what most children could do and is in fact what most children did do before compulsory schooling was instituted in the US in the 1800's.
Posted by: Linda1 | August 22, 2014 at 09:44 AM
Dear Skepticals,
Your opinion is not a well informed one and it is ok. I too was skeptical. I also thought it was too good to be true. I wondered if my own child could do what Tim has been doing. Tim's mother invited me to observe them.
I met Timothy this Spring 2014. I watched as he did a lesson on probability. He pointed to the answers on a number stencil and spelled words like DECIMALS, LINCOLN, and TAILS when asked specific questions.
At the end of the session his mother asked him if he wanted to ask or say anything to me. He spelled ARE YOU IMPRESSED? I said yes and that he was so smart. Another day during a session I saw Tim spell out sentences for an English essay. Both sessions were video taped. I actually met with other parents and showed the videos of Tim.
I was so amazed I decided to introduce my son to RPM. In fact Tim had suggested this by spelling it to me. I have since brought my own son to a RPM practitioner and have experienced similar success. At two recent RPM workshops in my area I saw many non-verbal children spell and do academics, in some cases for the very first time. It is not only Tim and my son but most likely all non-verbal autistic population who can do way more than we believe.
Unfortunately, we all have been brainwashed and the experts on Autism really do not know much. We have yet to find out answers. I am so happy that Tim and his mother showed me the truth. We have a new beginning and I recommend RPM to everyone. Try it with an experienced provider first, then you can give your well informed opinion. Please be careful to not discourage parents of those on the spectrum from a wonderful opportunity.
Please read Ido in Autismland by Ido Kedar. Watch Wretches & Jabberers and then you will be better informed.
Posted by: Simone Velasco | August 22, 2014 at 08:55 AM
I guess you can never tell with such a thing exactly how much is assistance (using th term broadly). It probably encases some deep and disturbing truths.
Posted by: John Stone | August 22, 2014 at 08:07 AM
"As it was I felt humiliated and patronized. I wanted so much to apologize for my outburst and violence. I regret not controlling my impulses."
I think some people are being unfair here. While acknowledging and questioning his verbal ability, you are at the same time expecting him to have and express profound insight into the social situation that he is describing. He does show insight and he does say that he wanted to apologize and do better next time. It seems that you are saying that because he is able to articulate the event, that he should have been able to prevent it, that if he is so articulate, that then he shouldn't be autistic and should be able to exercise control over his symptoms. I don't know about that.
Posted by: Linda1 | August 22, 2014 at 06:23 AM
Dearest Tim,
Thank you for sharing how it felt for you. I too send you a big smile from my heart. You are able to communicate your feelings and connect with society. How amazing is that. Keep sharing your magic with your family, community and the world. You are amazing and good. Great love from Katharina.
Posted by: Katharina Murdoch | August 22, 2014 at 03:10 AM
Cia Parker,
I do understand your point of view. My son seems to have similar speech issues to your daughter. He can speak , but has speech apraxia. He can understand language pretty well, but he cannot write it better than he can speak it; in fact writing requires another level of processing, first find the words, then hold them in your mind long enough to write down a sentence, that is definitely harder for him. But he is bright in a different way, learns well from videos/visual input and learned sign language quickly when he was young. He still signs "water" or "food' when he is tired sometimes because it is easier than words.
Similarly his grandfather who had brain cancer had surgery that affected his speech.
He couldn't write at all, and his speech was some useful/relevant words mixed with some random words, but he could understand pictures of what was happening really well. Everyone was having a discussion of what they were going to do after he arrived at the airport, and I could see he was lost. I drew pictures of the things they intended to do, and he got it immediately, and started to contribute .
I understand intelligence without speech, but find it harder to understand fluent written language, at
about a college level, with no apparent verbal language.
Having said that maybe this young man has a different type of speech problem. But I would want to see absolute independence in his answers. ie His ability to answer questions based on information he would know, and that the helper or translator did not know, or perhaps was told incorrectly. If the translator thinks he had chocolate pudding for lunch, but he really had vanilla pudding and he types what to the helper would be the "wrong" answer, that is pretty conclusive.
Has any test like that been done?
Re the article though, I also felt that compassion for someone who is hitting other people comes mainly because the idea is that they are unaware of what they are doing ( and don't realize they are injuring people) or have lost control so far that they can't stop themselves. The latter however requires apologies for hurting others, and an attempt to do better next time.
Beating other people up without any regret or remorse, and being annoyed because they don't have "enough compassion" begs the question: How much compassion did you have for them and the injuries they sustained?
While it is understandable that overwhelming input and misery can result in loss of control, harming others because you are miserable without any sense that this is wrong, and without doing your best to prevent it, is a little worrying.
Posted by: Hera | August 22, 2014 at 12:06 AM
Cia, Eileen, and the other skeptics,
First, you have no right to request medical information from a stranger, especially one protected by the Americans with Disabilities Act. And no one cares whether or not you believe it. Tim is one of countless adults with autism who have suffered in their caged mind for the majority of their life, only recently given the opportunity to use written communication en lieu of verbal. If you're authentically interested in learning about these silent brilliant minds, "Carly's Voice" is one of the most popular autobiographical books co-written by a non-verbal adult with autism (20/20 did an episode on her), and "How Can I Talk if My Lips Don't Move" was independently written by Tito Muhopdhyay, the son of the woman who developed Rapid Prompting Method. Professionals in the field, like myself, are ecstatic at the revolutionary communication methods being developed, and I'm honored that Tim fearlessly shared his insight with us.
But, again, it doesn't matter if you remain a skeptic. The only thing that matters is that the brilliant mind of Tim, and other people with autism, can finally express their needs, frustrations, fascinations, dreams, and plight of being non verbal. Your opinion is worthless until you have an opportunity to interact with one of these exceptional minds; at which time I hope you wake up and smell your indecency and attempt some compassion for a change. Until then, keep your skepticism to yourself.
Posted by: Annie Sidner | August 21, 2014 at 11:57 PM
Tim, thank you so much for sharing such an intimate experience with us. You are a remarkable young man!
Posted by: bethSec | August 21, 2014 at 10:02 PM
Eileen,
Isn't it possible that Tim's problem is motor and not sensory, in that he understands perfectly well what is going on around him, and also understands what he wants to communicate, but lacks the ability/connections to speak?
Posted by: Linda1 | August 21, 2014 at 09:08 PM
To the skeptics,
Maybe Tim's situation is similar to Christopher Nolan's, who was deprived of oxygen at birth and had cerebral palsy that made him unable to communicate until when older he was given access to a special typewriter and out poured award winning language. I remember his book, _Under the Eye of the Clock_.
Posted by: Linda1 | August 21, 2014 at 09:02 PM
I am his teacher for 2 years and he is a remarkable adult. These are his feelings and his words. I can attest to that.
Posted by: Caitlin ceppaglia | August 21, 2014 at 08:52 PM
"They speak too rapidly and don’t wait for me to respond. If only they would notice how I am trying to fit in and be more typical."
Tim,
Thank you for sharing your personal experience. Not sure I qualify as being on the spectrum, but maybe I relate a little. I always felt expected to say more than I could mentally drum up, especially in a group, and I was pretty sensitive about how insipid most of my responses (when they finally came out) seemed. I felt like I was really putting myself out on a limb, emotionally, to try.
My daughter on the spectrum at a very young age would cry at me when I would try to play the piano, especially a new piece of music. She seemed to really enjoy the most familiar ones though. I had/have the impression it took her time and experience with what is coming to organize and bear all the auditory input? What I wonder about her brain (and mine really) is if she processes input more slowly or possibly filters less out, i.e. has more to process (or some of both)? She does pick up audio too soft for me to hear, but she doesn't mind her favorite music loud, too loud (for my wifi pummeled brain anyway).
I guess what I'm trying to say is I can understand how it might be possible that you understood what others were saying around you from an early age, while being unable to communicate your understanding, and it's uplifting to see that you are able to share more now.
Posted by: Jeannette Bishop | August 21, 2014 at 08:25 PM
I agree Eileen. I am VERY skeptical he would communicate in such advanced language. I do think aug. communication is wonderful, but I really doubt he would be using such sophisticated language. Sorry, not buying it.
Posted by: JV | August 21, 2014 at 06:25 PM
I agree with Eileen, this is not the language of someone who has been locked out of language all his life. And that is just life, the inconveniences described here. I also feel tired, hot, dizzy, weak and overwhelmed in airports, but know better than to think that anyone cares or can or would do anything to help me. And no one is going to feel compassion for someone who assaults other passengers, but quite the contrary. Get real.
Posted by: cia parker | August 21, 2014 at 06:07 PM
Sorry, but I am skeptical. I commented Sunday (Aug 17) on the post by Brooke Potthast and her son James. I went over to PubMed and looked up: rapid prompting method autism. One article is free online, Chen et al. (2012). The most recent article by Tostanoski et al. (2014) I obtained via inter-library loan, and better answered my reservations. Read the abstract at least.
We need more information on Timothy Ryan’s language development. Does he, like James Potthast, have an auditory processing disorder? If so, what has enabled him to produce such well formed sentences? How did he acquire such a large vocabulary?
Are Timothy and James language problems a matter of pure speech apraxia? Are their language problems due to failure of development of Broca’s area? Did they develop normal understanding of speech? In PubMed I looked up: apraxia speech autism. This provided a citation to Tierney CD et al. Clear as mud: another look at autism, childhood apraxia of speech and auditory processing. Curr Opin Pediatr. 2012 Jun;24(3):394-9.
I was able to obtain a copy of the article by Tierney et al., which provided for me (despite its title) an excellent view of the components of language development. “Clear as mud” indicates the need for much more research on language development in autism. Functional MRI may be applicable to understanding maturation of the language areas (Wernicke’s and Broca’s).
Posted by: Eileen Nicole Simon | August 21, 2014 at 04:46 PM
Young adults like Tim have so much to tell us, so much to teach us and the world around them. I'm thrilled Tim has found his voice with RPM and I really hope that this will encourage other parents to try this method with their child.
Posted by: Alison MacNeil | August 21, 2014 at 02:24 PM
This is remarkable. I hope that Tim sends this to the flight crew so that they can understand what happened to him that day. It is also very important for others to know how stifling and inappropriate his schooling was for him and no doubt thousands of other children.
Posted by: Linda1 | August 21, 2014 at 10:27 AM