Chapter four The Cast of thought
What is our emotional foundation? Or more importantly, if Autism robs our children of this foundation, how do we *get it back*? To answer that question, we need to look at how our emotions emerge in the first place! How do we *think* about thinking?
We know our capacity to think and feel with our own perspective is a human trait. It is something I, as a parent took for granted before Autism came into my life.
This chapter goes into the process of having thoughts…and then perceiving that we are having thoughts. We obviously all have thoughts, and as we are thinking, we know other people who we are interacting with are also thinking. We know that they may be thinking different things then we are, but at the same time we can carry on a nice back and forth conversation or action because we are able to adjust to perspectives. For children on the spectrum, they think, but on in a very rigid manner. Their thinking can be black and white and since it can be hard to understand that other people have thoughts too, it appears that in every interaction, it is all about them or how something affects them.
For an example of this, I was reminded this week of the show Dragnet. If I admit I remember the show I admit my age so I what I will say is I think I was too young to watch it. :) But I remember people talking about it. Anyway, Sergeant Joe Friday would go into a situation and try and get information, and usually was encountered with * emotion*. He ended up having to shift through all the perspective and emotions to get * just the facts*. Of course this is necessary at times, but what if the brain was wired in such a way where it always asked *just the facts”? The world was seen as objective, just knowledge and facts.
The fact is, this would mean the neurology of that person had gaps in their early developmental milestones that prevented their emotional and social foundation from emerging. These gaps, then cause the domino effect of skills being build without the understanding of the social or emotional function of the skill. Knowing that you can think, in comparison to being able to perceive your thoughts and perspetives is at the heart of Chapter 4.
When our brains are comfortable and relaxed, we tend to be able to entertain thoughts, contemplate, or ponder much easier and be subjective in our thinking. We have opinions, feelings, emotions that are all built on what we have perceived.
We move from thought to though, we daydream, we come *back to reality* . WE can take an object, think about it, its color, its size, what we want to use it for. We can take up different perspectives to the very idea of having a thought about something- page 96
How does, and when does *this* start?
On page 99 Hobson talks about Symbolism. Symbolism enables us to think about Absent realities. As I continued to read, he used the example of a painting and what we *see* when we look at it. How do we interpret what the picture or painting is saying. If it is a picture of a memory, we look at the picture and reflect on that time, we ponder and entertain our emotions during that picture. We don’t simply look at the picture and think, Im wearing a blue shirt, there is a dog in the background, etc etc. The picture represents a symbol of our perspective.
One of the assessments within RDI, is reviewing meaningful pictures with a child. It is common for children with Autism to view pictures or paintings as something to label. By keeping track of this process, we can see the progression from the start where the child views pictures as items to label,.. to a representation of their own perspective as the child’s developmental gaps are filled in to what they were doing in the picture and their own perspective..
On poge 103, Hobson asks the question-How does the infant escape her sole view of the world to gain a vantage point from which she can survey the scene from a number of perspectives? I was a little surprised to read that object permanence was the next factor in this ability.
The reason this was fascinating to me is because in my experience with Autism, both as a parent and as a professional, one of the diagnostic criteria in the DSM for Autism is *plays with toys inappropriately.* so right there, we see that the part of the brain that fosters object permanence is affected.
“Object permanence is the understanding that objects continue to exist even when they cannot be seen, heard, or touched. It is acquired by human infants between 8 and 12 months of age via the process of logical induction to help them develop secondary schemes in their sensori-motor coordination. This step is the essential foundation of the memory and the memorization process.”
Alongside Object permanence and logic, an infant begins to see their world through the eyes of their parent, through borrowing their parents perspective. We see this with a child who checks back with an adult for safety before doing something they are unsure of. We also see this if a child falls or is startled in any way, and looks at his caregiver for their perspective before they react. Sometimes we as parents can hijack those tears if we smile and say Youre ok, compared to giving them a startled face in return and rushing towards them saying oh no are you ok? Alright I’ve done both, I’ll admit it! :) That is a great example of our babies learning about perspective by borrowing OUR perspective first! Great stuff in this chapter!
AN example of logic and perspective borrowing hand in hand is imitation. When you play on the phone and pretend to talk and a baby does imitates, or when a young child plays dolls…children even as they get older process their world through the perspective of their trusted parent The infant is learning about the toy but at the same time that toy is telling them alittle about their mom.
This is how perspective emerges, by the infant gaining a vantage point from which she can survey the scene from a number of perspectives. Page 103
In contrast, a child with Autism has had that neurological path effected in a way that they did not gain ( Or they lost something they once had) the foundational ability to see the world through another’s eyes, and have started down the path to see the world first through their own eyes. This information is crucial in knowing how we can restore development and perspective for our kids! We know that children on the spectrum want to keep their world *their* way, their perspective and easily fall apart when we reach into their world with our perspective. We know this is an important milestone that cannot be skipped when going back and giving our children a chance for a do over in their development.
While I can’t cover everything in this chapter, I wanted to end with talking about the role of language in the progression of perspective.
On Page 111…simularities between language and play words are used for communication in play and perspective. Learning language communicates social understanding. Once a child starts to *talk* they are typically excellent communicators socially and emotionally. They have already began the process of object permanence , symbolism, and borrowing perspectives. They are well on their way of understanding that they have their own perspective while another can have a differing perspective. I blogged about it here http://autismremediationforourchildren.blogspot.com/2010/07/principle-of-perspective-part-one.htm
Without these foundations in place or restored is lost, learning language becomes a static skill. This is evidenced by its purely instrumental use for labeling, needs , wants or scripting and not for emotional sharing or perspective. This is also the reason grammar is confused. To give an example, children will repeat the sentence said to them in order to respond. If you ask a child “ Do you want a drink of water” and when they are thirsty again and say to you “ do you want a drink of water” as their means to ask, they are missing the milestones and perspective taking necessary to determine how to change that sentence to express your perspective to their perspective. My own child years ago would continue to say Say when we were asking him to say Water, He did not understand that he was able to drop the “say” These are all indicators that a child does not use language correctly in relation to perspective communication. They do not yet have the skill to switch viewpoints in seeing the world through someone else’s eyes first, and then their own. One of a pet peeve of mine is Autism interventions who work on teaching language without these prerequisites in place. It is a pet peeve of mine because I myself did this to my one child on the spectrum. Once I learned about his developmental milestones needing to be addressed, I had to go back and undo how he learned language ( his chatter about nothing in particular or obsessing over a topic), and work on perspective within communication. By doing this, he now has the tools for meaningful friendships that are only possible with someone who is able to understand that both parties are *thinking and have a perspective” in an activity. For my second child on the spectrum I had learned how to effectively encourage communication within development. He never had any pronoun issues or lack of experience sharing communication.
A mom in the audience of the Dr Oz show said her son had a 4.0 average academically but cannot make a friend. The ability to make a friend starts in infancy…before language or before learning skills, It is rooted in our children’s emotional foundation.
This chapter reminded me why it is extremely important to understand the effect of addressing developmental milestones ( and what happens when we do not) in our children. Our kids, any child, dx or not, have enough to struggle through understanding childhood... removing certain obstacles to give them a better understanding of the social world is a huge advantage to this wonderful children!!
We won't sit still and let Autism continue to rob our children of the ease of their social and emotional abilities! We are taking back our children and removing as many obstacles for them as we can!!!
Sunday, February 20, 2011
Saturday, February 19, 2011
For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays
A few days ago I read a thoughtful article here
http://thinkingautismguide.blogspot.com/2011/02/for-physicians-10-things-you-can-do-to.html?m=1
). I like that Dr Som spoke up to bridge the topic, even though I don’t necessarily agree with everything said. The things I do agree with I kept. And are noted in a pretty blue as to give credit :)…. No sense recreating the wheel !! :) My comments are in black italic. Anyway, I wanted to do my own version, maybe to give to my pediatrician, not because I don’t like my pediatrician cause I do. I find him very open minded, easy to talk too, and he is not hard to look at either( you know… easy on the eyes ladies!)!! That said, as a mom of two children Dx on the spectrum and a professional in the field, I definitely have something to say on this topic…some of my thoughts applaud what Dr Som says, but some don’t. That’s ok because we as parents always need options to make informed decisions for our own children!! I know I did. I needed options for every step of the journey I made with my two children. They were both very different yet shared those core issues of Autism. So we, as parents don’t always agree, except when it comes to being able to make an informed decision for our own children and family! In the spirit of that, here is my addendum to-
For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays
The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices:
1. Understand the ABCs of behavior
• A= Antecedent = What happened immediately before the behavior?
• B= Behavior = A description of the behavior (not "he got angry")
• C= Consequences = How did the parent or teacher respond.
According to the American Academy of Pediatrics (AAP) policy statement on discipline, parents are more likely to use aversive techniques like spanking when they are angry or irritable, depressed, fatigued, or stressed.Although I cannot speak for all the caregivers of developmentally delayed children, one of these adjectives describes me all the time. The policy statement also mentions that spanking can be a positive reinforcer for children much like my firm "stop it" or sighing were for David. The policy does not address developmentally delayed or autistic children. The AAP policy statement on the maltreatment of children with disabilities discusses the issue, but I hope most pediatricians address behavior management techniques before there is concern about maltreatment.
Ok lets face it, you know as our doctor/working with our child on the spectrum, Autism shakes us to our core!
Understanding behaviors are indeed crucial to understanding what is going on with our children. But it is not all about shaping their behaviors…we as parents want to shape our children’s minds! Not just shape their minds to behave a certain way, but to truly think with the ability of reciprocal perpective taking in their decisions. We do appreciate some techniques from Behavioral modification, as they are shown effective in various degrees with addictions for adults or for our kids just trying to get them to brush their teeth with a sticker chart, etc. They show effectiveness with some children with Autism by teaching them a skill. I knew Behavioral modification before I knew Autism. With my first child, I thought I understood how ABA would help him. It did help him, according to most of you. But for me, he knew skills, and could talk for his needs, but socially and mindfully there were huge gaps!! But I was told how great he looked. He was recovered because he got A’s on his report card. Or because he could simply talk. Yet, He did not understand friendship because he could not take on another person’s perspective. I learned a valuable lesson that day for my younger son who was also Diagnosed with Autism…and for my older son to know how to still help him and not give up thinking it was as good as it gets. I stopped looking at Autism as a behavioral issue and started looking at our children as we would any typical child? Yes that’s right, pull out the what to expect the first year-5 years books and apply that information to our children too!! Can we give them a chance for a do over in their development that they missed the first time because of the assault on their neurology? As a Mom, I wanted that for my own children!! Not to change who he or she is, but to remove those obstacles because of those basic missed milestones that is at the core of our kids emotional foundation. Believe it can happen with me and don’t just try and get our kids to act a certain way. We want them to know why and feel competent in their social world! We want that to be the first line of defense so that we build upon a strong foundation so that they can resume on their developmental pathway!
We know our kids are missing vital developmental milestones so throwing them behavioral techniques are short term compensations that do little to help them develop theory of mind. That is why over and over again I hear “he does great academically but he can’t make a friend” The reason for this is because they do not have the foundational social and perspective skills that emerge in typical children as early as 6 months old. Think of the crisis of children entering adulthood on the spectrum. They can read, they can write, they can talk, but they do not have theory of mind for perspective, for intersubjectivity. What I’m proclaiming from the rooftop is, we now know so much more then we knew before concerning Autism. We want our children to think *on their feet*, to be mindful, and those actions, is where theory of mind emerge. And yes, it is possible! Raise the bar with me. RDI follows the traditional guide apprentice role comparable to how we interact with our typical children. We do not reinforce poor behavior either but at the same time reinforce that both child and mom are both going through a thought process during any interaction. With my 2nd child Diagnosed on the spectrum, after a short time of ABA in which we were making no progress, switching to RDI not only took care of his cognitive development, his ability to attain theory of mind, but also any behaviors that he was presenting. Sometimes Behavioral Modification is necessary for short term compensations, and has its place… but stop acting like it will give our children theory of mind!
2. ASK and LISTEN.
Many families assume that routine check ups for a child with autism are for vaccinations and other non-mental or behavioral health issues. Many families have seen or are actively seeing a developmental pediatrician or psychiatrist. Ask if these professionals are accessible and helpful when it comes to the very practical issue of daily discipline. If concerns are not being addressed, send your patients elsewhere. Sometimes just talking helps families find focus and prioritize what they juggle everyday. Most of all understand that some parents will now have trust issues with you. After all, you may have been the same doctor who told them their child may need to be institutionalized or the educator that says that they don’t expect much from our child. Please recognize parents as an effective team member who has more vested in this issue, their child. They spent sleepless nights reading, on the internet, etc. Listen to what they have to say.
3. Know where to send your patients.
Do you know the specific schools or programs in your community that excel for children with cerebral palsy, developmental delays, or autism? Which therapies do you suggest and for what reason?
Not all therapists are equally skilled, which is especially true if the child is seeing a therapist via a state early intervention program. If you reflexively send special-needs patients to the triad of occupational therapy (OT), physical therapy (PT) and Speech Language therapy (SLP), without determining a child's unique needs, the family's insurance, and what your patient's Special Education Local Area Plan (SELPA) offers, you are not providing a true medical home.
One thing you can do is to enlist the help of parents of special-needs children in your practice. Ask if they would mind if a parent in need contacted them. We wish desperately that a primary care doctor or specialist had done that for us, especially when we first relocated.
This is important because it is easy to fall into the trap of thinking something is effective, but to talk to parents who has been down that road, and then see the outcome, is huge in bridging the gap from what is thought to be effective, to what is truly effective in the long term.
4. Send your patients to a Certified Relationship Development Intervention Consultant who has completed their training with RDI. Also note that each year, these same consultant ( http://www.rdiconnect.com/pages/Find-a-Consultant.aspx ) must be recertified to show they are on top of the current research on developmental milestones for our children, and what is effective long term. This is the first line of defense for our children. After a RDI program under the direction of a certified consultant is in place in the home, the program can then branch out with mindful coaches as extenders for the family and in to the school if the child is school age. It may be necessary for a behaviorist to collaborate for short term compensation. But that is not always needed. RDI is clinically proven and is an evidence based emerging treatment. It is important to keep up with research on what Autism is to know how to effective help our children long term. Typical development is plan A. We need to stop doing plan B with children on the spectrum and restore their plan A! This reduces the need for always having to react to a new behavior and is a proactive approach.
5. Advocate for insurance reimbursement.
I believe in insurance reform to treat Autism as a developmental and medical condition, not a behavioral condition. I believe that treating the underlying foundational issues of Autism is far more cost effective then trying to alter their behavior from those unaddressed gaps in development. However, I believe in parental choice. If a parent chooses to use an intervention that addresses development compared to behaviors, they should have this choice. I believe it is empowering to help parents help their children. I believe that parents are the most effective therapists for their children. Since Autism is a developmental disorder, a bond of trust is crucial between parent and child. Because of Autism, this emotional trust is crucial and was thwarted because of Autism Once a regulation of this trust is strong, coaches to assist the parent can be brought in as necessary. This places parents as part of the professional team helping their children.
If you want private insurance to help, wait until the child pulls out everybody's hair and becomes a danger to himself or others. Then he can go to the ER while he waits for a bed at a an inpatient psychiatric facility. Obviously, I am not seriously advocating this course, as it is not humane -- or cost effective. Legislation in various states attempts to compel insurers to pay for autism therapies, but loopholes almost universally allow insurers to weasel out of reimbursing for ABA.
After I chuckled at this remark of course, I realized how sad it is that this is indeed what insurance does to us!! Advocate for addressing the Antecedent of why the child feels incompetent in their social world in the first place.
6. Say NO to drugs as a first line approach.
Say this three times out loud: "No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan.
Although the AAP policy statement on the management of children with autism advocates for this approach, (published November 1, 2007; reaffirmed December 1, 2010) the AAP policy statement does not mention discipline strategies in any detail nor does it broach the subject of child maltreatment. It spends one paragraph on the importance of a behavior plan for an a child with "challenging behaviors," and then three and half pages on drugs, most of which are not well studied. There is a one page table that suggests specific classes of drugs for specific problems. Why isn't there a comparable table illustrating behavioral solutions or approaches to common problem behaviors? The policy statement assumes that you will be able to easily send the child to a specialist for a functional behavior analysis while you get ready to write the prescription.
Imagine if pediatricians or family practice physicians handled asthma this way. The child would arrive at the office coughing and dyspneic [short of breath]. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.
7. Help your patients' parents develop meaningful familial supports before crisis.
Of course an effective behavior plan requires not only an experienced professional for design but a motivated caretaker to implement. Personally, I can think of a handful of occasions when I would have benefited from a therapist in my home for intense short periods -- for example, when toilet training.
Here is one example: I write lots of prescriptions for diapers and incontinence undergarments for autistic children older than five, so that the parents can be compensated for the cost of these items. Many, if not most, children with autism can be toilet trained -- if their parents or caregivers have help from experienced professionals in this area. However, in my state, Medicaid pays for all the diapers you want but will not pay for any ABA or in-home behavior management.
This is where RDI again, looks at the why of the behavior and targets the missing milestones instead of just the behaviors. RDI targets behaviors too, which is why I agree with a behavior plans in context to the high goal of removing the obstacle through theory of mind. By addressing cognitive development, RDI addresses behaviors. Behavioral techniques that foster mindfulness are included within RDI.
8. Stop making parents the only "experts" on their child.
We do not diagnose a child with muscular dystrophy, brain cancer, or blindness, and then tell her parents that they are the real experts, but you will be available for consultation. We do not reassure parents of a child with these diagnoses that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. We should not use this approach for parents of children with an autism diagnosis.
How can we go from institutionalizing children with autism and blaming the disorder on their parents -- just 40 years ago -- to making parents the experts on autism treatments?
I like the idea of bridging this gap by "hospitalizing" the child and bringing the behaviorist/Coach to the house. I dream big. In the meantime, YouTube has great videos of families using RDI (sample search) or ABA (sample search). Autism Speaks now has its own channel.
It is sad that no physician has ever suggested to us -- fellow physicians -- that we could use resources such as online videos as a way for us to learn about therapies. Describing behavior therapies is like writing an essay about how to Salsa. Encourage families to find a way to observe it in action. Understanding each intervention and the purpose for that intervention helps parents make informed decisions!
9. Advocate for better training for folks on the front line.
Who are those on the front line? Social workers, early intervention educators, caseworkers from your state's developmental and /or cognitive service provider, special education teachers, and therapists -- those are the front-line folks you will meet. All need ongoing training -- in advances in remediation, and advances in what is known about education and behavior management for people with developmental delays. With social media and telemedicine there is no reason that individuals well-versed in behavior management cannot help children even in the most remote areas.
I know a marvelous occupational therapist who worked full time with autistic children. She cut back her hours because of fatigue. She wants so much to help train other people, but there is no way for her to make a living that way. Sometimes schools, counties, insurance companies, and large free standing children's hospitals do not want to pay for consultation with a behavior specialist, or allow their employees to take time away from client duties to get better trained. In the big picture, it would not only save money it would save lives.
10. Stop corporal punishment in schools and in homes.
Human Rights Watch reported that children with disabilities including those with autism were more likely to endure corporal punishment in schools than their typical peers. Nobody would ever know if I hit my son on a regular basis. Although he is verbal, he would never be able to articulate abuse to anyone. There are limited studies on what parents do in the home for discipline. Most parents understand that their children are fragile and different. However, they lead incredibly stressful lives with very limited respite options. They need techniques to combat aggressive behavior effectively and safely.
http://thinkingautismguide.blogspot.com/2011/02/for-physicians-10-things-you-can-do-to.html?m=1
). I like that Dr Som spoke up to bridge the topic, even though I don’t necessarily agree with everything said. The things I do agree with I kept. And are noted in a pretty blue as to give credit :)…. No sense recreating the wheel !! :) My comments are in black italic. Anyway, I wanted to do my own version, maybe to give to my pediatrician, not because I don’t like my pediatrician cause I do. I find him very open minded, easy to talk too, and he is not hard to look at either( you know… easy on the eyes ladies!)!! That said, as a mom of two children Dx on the spectrum and a professional in the field, I definitely have something to say on this topic…some of my thoughts applaud what Dr Som says, but some don’t. That’s ok because we as parents always need options to make informed decisions for our own children!! I know I did. I needed options for every step of the journey I made with my two children. They were both very different yet shared those core issues of Autism. So we, as parents don’t always agree, except when it comes to being able to make an informed decision for our own children and family! In the spirit of that, here is my addendum to-
For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays
The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices:
1. Understand the ABCs of behavior
• A= Antecedent = What happened immediately before the behavior?
• B= Behavior = A description of the behavior (not "he got angry")
• C= Consequences = How did the parent or teacher respond.
According to the American Academy of Pediatrics (AAP) policy statement on discipline, parents are more likely to use aversive techniques like spanking when they are angry or irritable, depressed, fatigued, or stressed.Although I cannot speak for all the caregivers of developmentally delayed children, one of these adjectives describes me all the time. The policy statement also mentions that spanking can be a positive reinforcer for children much like my firm "stop it" or sighing were for David. The policy does not address developmentally delayed or autistic children. The AAP policy statement on the maltreatment of children with disabilities discusses the issue, but I hope most pediatricians address behavior management techniques before there is concern about maltreatment.
Ok lets face it, you know as our doctor/working with our child on the spectrum, Autism shakes us to our core!
Understanding behaviors are indeed crucial to understanding what is going on with our children. But it is not all about shaping their behaviors…we as parents want to shape our children’s minds! Not just shape their minds to behave a certain way, but to truly think with the ability of reciprocal perpective taking in their decisions. We do appreciate some techniques from Behavioral modification, as they are shown effective in various degrees with addictions for adults or for our kids just trying to get them to brush their teeth with a sticker chart, etc. They show effectiveness with some children with Autism by teaching them a skill. I knew Behavioral modification before I knew Autism. With my first child, I thought I understood how ABA would help him. It did help him, according to most of you. But for me, he knew skills, and could talk for his needs, but socially and mindfully there were huge gaps!! But I was told how great he looked. He was recovered because he got A’s on his report card. Or because he could simply talk. Yet, He did not understand friendship because he could not take on another person’s perspective. I learned a valuable lesson that day for my younger son who was also Diagnosed with Autism…and for my older son to know how to still help him and not give up thinking it was as good as it gets. I stopped looking at Autism as a behavioral issue and started looking at our children as we would any typical child? Yes that’s right, pull out the what to expect the first year-5 years books and apply that information to our children too!! Can we give them a chance for a do over in their development that they missed the first time because of the assault on their neurology? As a Mom, I wanted that for my own children!! Not to change who he or she is, but to remove those obstacles because of those basic missed milestones that is at the core of our kids emotional foundation. Believe it can happen with me and don’t just try and get our kids to act a certain way. We want them to know why and feel competent in their social world! We want that to be the first line of defense so that we build upon a strong foundation so that they can resume on their developmental pathway!
We know our kids are missing vital developmental milestones so throwing them behavioral techniques are short term compensations that do little to help them develop theory of mind. That is why over and over again I hear “he does great academically but he can’t make a friend” The reason for this is because they do not have the foundational social and perspective skills that emerge in typical children as early as 6 months old. Think of the crisis of children entering adulthood on the spectrum. They can read, they can write, they can talk, but they do not have theory of mind for perspective, for intersubjectivity. What I’m proclaiming from the rooftop is, we now know so much more then we knew before concerning Autism. We want our children to think *on their feet*, to be mindful, and those actions, is where theory of mind emerge. And yes, it is possible! Raise the bar with me. RDI follows the traditional guide apprentice role comparable to how we interact with our typical children. We do not reinforce poor behavior either but at the same time reinforce that both child and mom are both going through a thought process during any interaction. With my 2nd child Diagnosed on the spectrum, after a short time of ABA in which we were making no progress, switching to RDI not only took care of his cognitive development, his ability to attain theory of mind, but also any behaviors that he was presenting. Sometimes Behavioral Modification is necessary for short term compensations, and has its place… but stop acting like it will give our children theory of mind!
2. ASK and LISTEN.
Many families assume that routine check ups for a child with autism are for vaccinations and other non-mental or behavioral health issues. Many families have seen or are actively seeing a developmental pediatrician or psychiatrist. Ask if these professionals are accessible and helpful when it comes to the very practical issue of daily discipline. If concerns are not being addressed, send your patients elsewhere. Sometimes just talking helps families find focus and prioritize what they juggle everyday. Most of all understand that some parents will now have trust issues with you. After all, you may have been the same doctor who told them their child may need to be institutionalized or the educator that says that they don’t expect much from our child. Please recognize parents as an effective team member who has more vested in this issue, their child. They spent sleepless nights reading, on the internet, etc. Listen to what they have to say.
3. Know where to send your patients.
Do you know the specific schools or programs in your community that excel for children with cerebral palsy, developmental delays, or autism? Which therapies do you suggest and for what reason?
Not all therapists are equally skilled, which is especially true if the child is seeing a therapist via a state early intervention program. If you reflexively send special-needs patients to the triad of occupational therapy (OT), physical therapy (PT) and Speech Language therapy (SLP), without determining a child's unique needs, the family's insurance, and what your patient's Special Education Local Area Plan (SELPA) offers, you are not providing a true medical home.
One thing you can do is to enlist the help of parents of special-needs children in your practice. Ask if they would mind if a parent in need contacted them. We wish desperately that a primary care doctor or specialist had done that for us, especially when we first relocated.
This is important because it is easy to fall into the trap of thinking something is effective, but to talk to parents who has been down that road, and then see the outcome, is huge in bridging the gap from what is thought to be effective, to what is truly effective in the long term.
4. Send your patients to a Certified Relationship Development Intervention Consultant who has completed their training with RDI. Also note that each year, these same consultant ( http://www.rdiconnect.com/pages/Find-a-Consultant.aspx ) must be recertified to show they are on top of the current research on developmental milestones for our children, and what is effective long term. This is the first line of defense for our children. After a RDI program under the direction of a certified consultant is in place in the home, the program can then branch out with mindful coaches as extenders for the family and in to the school if the child is school age. It may be necessary for a behaviorist to collaborate for short term compensation. But that is not always needed. RDI is clinically proven and is an evidence based emerging treatment. It is important to keep up with research on what Autism is to know how to effective help our children long term. Typical development is plan A. We need to stop doing plan B with children on the spectrum and restore their plan A! This reduces the need for always having to react to a new behavior and is a proactive approach.
5. Advocate for insurance reimbursement.
I believe in insurance reform to treat Autism as a developmental and medical condition, not a behavioral condition. I believe that treating the underlying foundational issues of Autism is far more cost effective then trying to alter their behavior from those unaddressed gaps in development. However, I believe in parental choice. If a parent chooses to use an intervention that addresses development compared to behaviors, they should have this choice. I believe it is empowering to help parents help their children. I believe that parents are the most effective therapists for their children. Since Autism is a developmental disorder, a bond of trust is crucial between parent and child. Because of Autism, this emotional trust is crucial and was thwarted because of Autism Once a regulation of this trust is strong, coaches to assist the parent can be brought in as necessary. This places parents as part of the professional team helping their children.
If you want private insurance to help, wait until the child pulls out everybody's hair and becomes a danger to himself or others. Then he can go to the ER while he waits for a bed at a an inpatient psychiatric facility. Obviously, I am not seriously advocating this course, as it is not humane -- or cost effective. Legislation in various states attempts to compel insurers to pay for autism therapies, but loopholes almost universally allow insurers to weasel out of reimbursing for ABA.
After I chuckled at this remark of course, I realized how sad it is that this is indeed what insurance does to us!! Advocate for addressing the Antecedent of why the child feels incompetent in their social world in the first place.
6. Say NO to drugs as a first line approach.
Say this three times out loud: "No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan.
Although the AAP policy statement on the management of children with autism advocates for this approach, (published November 1, 2007; reaffirmed December 1, 2010) the AAP policy statement does not mention discipline strategies in any detail nor does it broach the subject of child maltreatment. It spends one paragraph on the importance of a behavior plan for an a child with "challenging behaviors," and then three and half pages on drugs, most of which are not well studied. There is a one page table that suggests specific classes of drugs for specific problems. Why isn't there a comparable table illustrating behavioral solutions or approaches to common problem behaviors? The policy statement assumes that you will be able to easily send the child to a specialist for a functional behavior analysis while you get ready to write the prescription.
Imagine if pediatricians or family practice physicians handled asthma this way. The child would arrive at the office coughing and dyspneic [short of breath]. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.
7. Help your patients' parents develop meaningful familial supports before crisis.
Of course an effective behavior plan requires not only an experienced professional for design but a motivated caretaker to implement. Personally, I can think of a handful of occasions when I would have benefited from a therapist in my home for intense short periods -- for example, when toilet training.
Here is one example: I write lots of prescriptions for diapers and incontinence undergarments for autistic children older than five, so that the parents can be compensated for the cost of these items. Many, if not most, children with autism can be toilet trained -- if their parents or caregivers have help from experienced professionals in this area. However, in my state, Medicaid pays for all the diapers you want but will not pay for any ABA or in-home behavior management.
This is where RDI again, looks at the why of the behavior and targets the missing milestones instead of just the behaviors. RDI targets behaviors too, which is why I agree with a behavior plans in context to the high goal of removing the obstacle through theory of mind. By addressing cognitive development, RDI addresses behaviors. Behavioral techniques that foster mindfulness are included within RDI.
8. Stop making parents the only "experts" on their child.
We do not diagnose a child with muscular dystrophy, brain cancer, or blindness, and then tell her parents that they are the real experts, but you will be available for consultation. We do not reassure parents of a child with these diagnoses that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. We should not use this approach for parents of children with an autism diagnosis.
How can we go from institutionalizing children with autism and blaming the disorder on their parents -- just 40 years ago -- to making parents the experts on autism treatments?
I like the idea of bridging this gap by "hospitalizing" the child and bringing the behaviorist/Coach to the house. I dream big. In the meantime, YouTube has great videos of families using RDI (sample search) or ABA (sample search). Autism Speaks now has its own channel.
It is sad that no physician has ever suggested to us -- fellow physicians -- that we could use resources such as online videos as a way for us to learn about therapies. Describing behavior therapies is like writing an essay about how to Salsa. Encourage families to find a way to observe it in action. Understanding each intervention and the purpose for that intervention helps parents make informed decisions!
9. Advocate for better training for folks on the front line.
Who are those on the front line? Social workers, early intervention educators, caseworkers from your state's developmental and /or cognitive service provider, special education teachers, and therapists -- those are the front-line folks you will meet. All need ongoing training -- in advances in remediation, and advances in what is known about education and behavior management for people with developmental delays. With social media and telemedicine there is no reason that individuals well-versed in behavior management cannot help children even in the most remote areas.
I know a marvelous occupational therapist who worked full time with autistic children. She cut back her hours because of fatigue. She wants so much to help train other people, but there is no way for her to make a living that way. Sometimes schools, counties, insurance companies, and large free standing children's hospitals do not want to pay for consultation with a behavior specialist, or allow their employees to take time away from client duties to get better trained. In the big picture, it would not only save money it would save lives.
10. Stop corporal punishment in schools and in homes.
Human Rights Watch reported that children with disabilities including those with autism were more likely to endure corporal punishment in schools than their typical peers. Nobody would ever know if I hit my son on a regular basis. Although he is verbal, he would never be able to articulate abuse to anyone. There are limited studies on what parents do in the home for discipline. Most parents understand that their children are fragile and different. However, they lead incredibly stressful lives with very limited respite options. They need techniques to combat aggressive behavior effectively and safely.
Saturday, January 22, 2011
The Dawn of thinking (ASD and Theory of mind)
Chapter 3 The Cradle of thought
What can RDI do for your Family/Child?
In reading chapter 3, a question was in the forefront. Ok, so we know that children on the spectrum lack Theory of mind. From my 11 years of experience with Autism, both as a parent and a professional, this is undisputed. But before I continue with the question of what RDI does for the child on the spectrum, we need to think about what our own determination of theory of mind is. Do we believe that our children on the spectrum can have that intersubjectivity within their relationships? Do we think this knowledge is crucial when determining what intervention best fits our beliefs? In exploring this belief we determine the direction in which you choose to help your child with Autism. Questions like, how does this help my child with perspective, or how will my child understand inferences compared to black and white thinking?
I wanted to mention here, the complexity of the lack of *sharing another’s state of mind* is evident in both infantile Autism and regressive Autism. This is a core deficit of both forms with different triggers. In many children on the spectrum, regardless of either Diagnoses, a co occurring condition of sensory integration, or inflammation of the gastrointestinal track must also be simultaneously addressed alongside theory of mind. Bio medical treatment and/or brain integration help heal the assault on the brain, but the core deficits must always be addressed in addition to getting the child’s immune system working properly.
This Chapter, and woven throughout the remaining chapters of the book, explains what RDI can do for a child on the spectrum…through the lens of intersubjectivity which leads to theory of mind.
Looking at the *dawn* of thinking...and the definition of primary intersubjectivity .
Primary- Actions and emotional state of a baby up to 9 months old
Inter- Something happening between two people
Subjectivity- Your unique appraisal, thoughts, perceptions, feelings memories and dreams
For a baby about 3-9 months of age, Intersubjectivity is about *us* Think of the games we play with them , peekaboo, etc. Very Simple actions that are centered around both people involved. On the foundational level, 9 month old’s are able to accept the initiation of peekaboo, manage their attention, respond to both attention and lack of attention. These actions are referred to as being able to emotionally regulate with the other person.
In the coming chapters of The Cradle of thought, we will go through all the stages of intersubjectivity. Since the foundational milestones in RDI are based in the ability to share with another’s mind ( being conscience of another’s conscienceness), most children who start RDI start here regardless of the therapies they may have received in the past. This is where families learn about the Guide Apprentice role that we intuitively do with typical children ( we are their guide, and they are our Apprentice to the world as we teach them). With the Diagnoses of Autism, we fall into the role of following them around and reversing what is done with typical children. I should mention here to reach into a child’s world with Autism, we do not have to give up the role of Guide. As we guide our children to regulate with our actions and roles, this forms the ability for joint attention which is crucial to a child as young as 3 months. Think of Peek A boo…without the child being able to share joint attention with the Mother/Father, you can visualize how that would affect the emotional connection. This primary stage is huge as these functions in development lay the groundwork for all future understanding of how we, in our relationships, depend on collaboration and shared perceptions .
Secondary Inter Subjectivity begins from 9 months - 15 months….which I will save for Chapter four “The Cast of thought”.
So let’s take a look at the very basic primary stage that a typical 9 month old has mastered . A few of the mastered milestones of this stage is –
Managing attention
Acceptance of initiation/invitation
Response to initiation failures
Response to initiation successes
Coordination of emotional tone (happy, sad, etc)
Coordination of emotional intensity (a little excited or very excited)
Balance of communication (verbal, non-verbal, etc)
As you look at the mastered milestones, you’ll notice that these milestones are very necessary to have meaningful reciprocal relationships. It is incredible to me that a 7 month old has the foundational skills to begin to understand friendships and meaningful relationships because of their emerging theory of mind, knowing that social interaction are about *us*, Their thoughts begin to move out of instrumental * me* and into the next stage where they want to share experiences.
What I have found as both a parent of 4, 2 diagnosed on the spectrum, who had to help both move out of instrumental mode along with professionally seeing many children who were trained for many skills but their theory of mind was never addressed…is You cannot skip this crucial stage without consequences. Over and over social skills groups try to address the lack of social understanding with our children, and while their attempts are well meaning, their methodology is just another rote way to try and build upon a weak foundation because basic milestones have never been met. A parent will say to me, if only my child could get a friend!! Or they will let me know their biggest challenge is initiating friendships with their peers. Now look back at those primary milestones…This is where the function of learning about friendship begins.
Another common thread that I hear with parents is regression . Again, our children are just like any other child, and they need these basic milestones in place to have a strong foundation...to build upon. Yes, it must be done in a more deliberate, precise way as they did not get the milestones the first time due to their own triggers that caused Autism. But in no way can they be skipped in hopes that they can be taught how to fake it with scripts, without having the intentionality of wanting to seek out relationships from their intruistic motivation.
What can RDI do for your child and family? The piece of mind knowing that you are affording your child a second chance at milestones that were missed the first time, protecting him against regression, and giving him/her the foundational skills to build meaningful friendships ( just as their peers learned it) as he progresses in his treatment for Autism. These milestones are needed no matter where your child falls on the spectrum ( debunking the *rumor* that RDI is just for Aspergers or HFA) as my own 2 children were PDD and Severe Infantile Autism.
Kathy
www.autismremediationforourchildren.com
What can RDI do for your Family/Child?
In reading chapter 3, a question was in the forefront. Ok, so we know that children on the spectrum lack Theory of mind. From my 11 years of experience with Autism, both as a parent and a professional, this is undisputed. But before I continue with the question of what RDI does for the child on the spectrum, we need to think about what our own determination of theory of mind is. Do we believe that our children on the spectrum can have that intersubjectivity within their relationships? Do we think this knowledge is crucial when determining what intervention best fits our beliefs? In exploring this belief we determine the direction in which you choose to help your child with Autism. Questions like, how does this help my child with perspective, or how will my child understand inferences compared to black and white thinking?
I wanted to mention here, the complexity of the lack of *sharing another’s state of mind* is evident in both infantile Autism and regressive Autism. This is a core deficit of both forms with different triggers. In many children on the spectrum, regardless of either Diagnoses, a co occurring condition of sensory integration, or inflammation of the gastrointestinal track must also be simultaneously addressed alongside theory of mind. Bio medical treatment and/or brain integration help heal the assault on the brain, but the core deficits must always be addressed in addition to getting the child’s immune system working properly.
This Chapter, and woven throughout the remaining chapters of the book, explains what RDI can do for a child on the spectrum…through the lens of intersubjectivity which leads to theory of mind.
Looking at the *dawn* of thinking...and the definition of primary intersubjectivity .
Primary- Actions and emotional state of a baby up to 9 months old
Inter- Something happening between two people
Subjectivity- Your unique appraisal, thoughts, perceptions, feelings memories and dreams
For a baby about 3-9 months of age, Intersubjectivity is about *us* Think of the games we play with them , peekaboo, etc. Very Simple actions that are centered around both people involved. On the foundational level, 9 month old’s are able to accept the initiation of peekaboo, manage their attention, respond to both attention and lack of attention. These actions are referred to as being able to emotionally regulate with the other person.
In the coming chapters of The Cradle of thought, we will go through all the stages of intersubjectivity. Since the foundational milestones in RDI are based in the ability to share with another’s mind ( being conscience of another’s conscienceness), most children who start RDI start here regardless of the therapies they may have received in the past. This is where families learn about the Guide Apprentice role that we intuitively do with typical children ( we are their guide, and they are our Apprentice to the world as we teach them). With the Diagnoses of Autism, we fall into the role of following them around and reversing what is done with typical children. I should mention here to reach into a child’s world with Autism, we do not have to give up the role of Guide. As we guide our children to regulate with our actions and roles, this forms the ability for joint attention which is crucial to a child as young as 3 months. Think of Peek A boo…without the child being able to share joint attention with the Mother/Father, you can visualize how that would affect the emotional connection. This primary stage is huge as these functions in development lay the groundwork for all future understanding of how we, in our relationships, depend on collaboration and shared perceptions .
Secondary Inter Subjectivity begins from 9 months - 15 months….which I will save for Chapter four “The Cast of thought”.
So let’s take a look at the very basic primary stage that a typical 9 month old has mastered . A few of the mastered milestones of this stage is –
Managing attention
Acceptance of initiation/invitation
Response to initiation failures
Response to initiation successes
Coordination of emotional tone (happy, sad, etc)
Coordination of emotional intensity (a little excited or very excited)
Balance of communication (verbal, non-verbal, etc)
As you look at the mastered milestones, you’ll notice that these milestones are very necessary to have meaningful reciprocal relationships. It is incredible to me that a 7 month old has the foundational skills to begin to understand friendships and meaningful relationships because of their emerging theory of mind, knowing that social interaction are about *us*, Their thoughts begin to move out of instrumental * me* and into the next stage where they want to share experiences.
What I have found as both a parent of 4, 2 diagnosed on the spectrum, who had to help both move out of instrumental mode along with professionally seeing many children who were trained for many skills but their theory of mind was never addressed…is You cannot skip this crucial stage without consequences. Over and over social skills groups try to address the lack of social understanding with our children, and while their attempts are well meaning, their methodology is just another rote way to try and build upon a weak foundation because basic milestones have never been met. A parent will say to me, if only my child could get a friend!! Or they will let me know their biggest challenge is initiating friendships with their peers. Now look back at those primary milestones…This is where the function of learning about friendship begins.
Another common thread that I hear with parents is regression . Again, our children are just like any other child, and they need these basic milestones in place to have a strong foundation...to build upon. Yes, it must be done in a more deliberate, precise way as they did not get the milestones the first time due to their own triggers that caused Autism. But in no way can they be skipped in hopes that they can be taught how to fake it with scripts, without having the intentionality of wanting to seek out relationships from their intruistic motivation.
What can RDI do for your child and family? The piece of mind knowing that you are affording your child a second chance at milestones that were missed the first time, protecting him against regression, and giving him/her the foundational skills to build meaningful friendships ( just as their peers learned it) as he progresses in his treatment for Autism. These milestones are needed no matter where your child falls on the spectrum ( debunking the *rumor* that RDI is just for Aspergers or HFA) as my own 2 children were PDD and Severe Infantile Autism.
Kathy
www.autismremediationforourchildren.com
Monday, January 17, 2011
Good Morning America, well …maybe not so good!
As I gave out a heavy sigh upon watching Good Morning America today, I decided to interrupt my regularly scheduled Blog ( I will post Chapter 3 on Wednesday!) because of George’s incredible rudeness on national television. I mean I get that he does now agree with Andrew Wakefield ( or he was told not to agree, whichever the case may be)…but I felt like I needed to give him a scolding for being so rude ( after all I do teach my children it is rude to continuously interrupt someone when they are soeaking)
So here are some of my musings of the current events these past few weeks!! Last week was Anderson Cooper, this week, Good Morning America ( and its only Monday!). Of course in between were countless interviews with Doctors, parents, reporters, etc…on both sides of the issue. And that issue is- Do Vaccines cause Autism?
Andrew Wakefield could not have been clearer, along with most people who spoke on the subject from both sides of the issue. The answer is, we don’t know. Even Doctors who claim that there is no connection admit the problem is, we simply don’t know what causes Autism! To me, well, if we don’t know, we cannot rule out anything without intense, non biased studies ( the studies where people are truly looking for the answer and not trying to disprove the other side) Intent is a huge factor within research and can have a huge impact on what is*FOUND* in research! We need studies that are not funded by the interest of the stakeholder!
Controversy always gets me thinking…and I tend to go back to History. I know that one of the quotes in the RDI book is from William James- “First, you know a theory is attacked; then it is admitted to be true, but obvious and insignificant; Finally it is seen to be so important that its adversaries claim that they themselves discovered it”
My own children who were diagnosed with Autism are now just about 14 and 10. I have been around long enough to see the tides turn within all kinds of opinions.
So since this is my blog, I wanted to share some of how I got to where I tend to take my mind when people are talking about something *new* something out of mainstream, and/or something controversial. I will try and keep this as short as possible, so if I miss something it is not because I did not want to talk about it. I am also in the unique position because I have two children diagnosed on the spectrum, One who was Diagnosed with Regressive Autism, and the other with Infantile Autism. Yes, there is a difference. And I also have two Neuro typical children. This is important because Autism is not triggered by one isolated incident but rather a perfect storm of genetics and/or environmental triggers. I am no doctor but I would think that being able to assess a child’s immune system, along with family history of allergies, etc could go an incredibly long way in making progress with pinpointing how to head off that trigger for each child who would be susceptible to regressive Autism. At the least it would be much more productive then trying to dismiss that Autism and Gastro immune issues co- exist in 70 percent of children with Autism as irrelevant. Remember the quote in the beginning of the blog. Keep in mind that there are doctors on both sides of the issues. A look at history tells us that Mainstream medicine focuses on understanding problems from the perspective of the stakeholders involved and then applying information and other technologies as needed. This serves us well in some cases, and in other cases it is a hindrance to, well…truth. It does this because the stakeholders have A LOT to lose
Since we are talking about Autism, I am going to use the my experience with two interventions the same way I look at what is currently in the news with Andrew Wakefield. I do this because as a parent, I needed to be doing something for my kids. Don’t get me wrong, effective research is vital in understanding Autism, but equally important is understanding effective long term treatment for our kids. After all, they are all going to grow up to be adults so this effects our entire society, not just those of us who have children on the spectrum.
Starting with Behaviorism we know that Dr Lovaas started his work in the early 1960’s. In 1965 there was a published article in LIFE regarding his * new treatment*
http://neurodiversity.com/library_screams_1965.html
My purpose is not to discuss this article in detail, but to merely continue to show the progression of research. Of course one might note that this article had to have drawn some criticism! One group maybe criticizing for not putting these children away and another group criticizing the methodology. Some parents saying how could the *other * parents let this be done to their children, while those parents were grateful that through behaviorism their child’s needs and wants could be voiced.
Backing up to see Dr Lovaas influences, In 1904 Pavlov won the Nobel prize for his work in conditioning. From the early 19th century and the early 20th Century behaviorism gained popularity among many philosophers. Dr Lovaas based some of his work on the studies of Ivan Pavlov and BF Skinner to apply conditioning/Behaviorism to help children with Autism. Before that period work was very limited for Autism/mentally handicapped children, even though behavioral techniques were being used in other fields for managing behaviors like addiction, etc. Let’s face it, after a long day we all reward ourself with a treat, etc. In these instances, we already have the social foundations of reading non verbal cues and perspective.
Dr Lovaas started his work in the 60’s. The article above just documented what he was working on ( 1965) yet it was not until the 70’s that he started actual research, which resulted to his first research paper published in 1987. This is an estimation of about 20 + years of research before the first study was published, and going back further before a connection was made that behaviorism could benefit mentally handicapped children. Ultimately, Dr Lovaas was the pioneer who was able to help parents by giving them the choice to not have to put their children in institutions, which was typical and recommended at the time. Looking back on History, I think it is safe to say that in the years from 1960 through 1987 there were many parents who could of taken advantage of behaviorism to help their children learn rote skills…but it was controversial. The Norm was institutionalization.
Keeping this in mind, take a look at the following video- Personally, while I watched this video for the 4th time, I could not help but think of the Mom. Would she of had to stand up against the Norm to keep her baby out of an institution? As parents, we know she could never forget!! It is heartbreaking to even think about!!
http://www.cbsnews.com/video/watch/?id=7096537n&tag=related;photovideo
How different would the conversation be with her doctor if this happened today? Really. Would it really be all that different?? The players may be different but the story is the same.
It took one man( Dr Lovaas, ) over 20 years to even start to put a dent in the fact that our children could learn. No, he did not have all the answers… but he had questions. Questions that he was willing to explore that went against conventional mainstream recommendations.
I could not help but think how we, as a society tend to repeat our mistakes. History repeats itself if we do not learn its lessons.
We know Molly’s Mom was told to put her away. Was she given any other options? Was she told about any *emerging treatments?* Was she educated on all her options?
Fast Forward from that study from Dr. Lovaas in 1987, a few years to the 1990’s.
Dr Gutstein , through his work as a clinical researcher, program developer, therapist and teacher, based his work on helping our children on the spectrum alongside those in the field, but unlike Lovaas, based his work in part with the cognitive revolution which became popular in the second half of the 20th century. As the understanding of the human mind evolved, so did philosophies. He saw the cognitive advances in Therapies and knew that again, they were not being applied to Autism. Did he know for sure that cognitive therapy would benefit children with autism when he started? No...but just as Dr. Lovaas questioned whether those with autism could learn and therefore not have to be institutionalized, Dr. Gutstein questioned whether it was possible to not only teach those with autism basic skills but to use cognitive therapy to improve their theory of mind and raise the bar. Obviously the work of Skinner and Pavlov that behaviorism is based on differs from the theory of cognitive development which is in part based on the work of Piaget and Vygotsky when it came to mindfulness and the ability to obtain theory of mind, The more we learn about the mind, the more we can adjust to what is truly helpful in the long term. Dr Gutstein had questions too …and challenges that Autism effects development and if you address theory of mind, you remediate Autism. Behaviors are merely a byproduct of the lack of intersubjectivity that our kids have. Addressing behaviors are sometimes a necessary compensation, but not a long term solution. This is evidenced by no long term studies concerning the effectiveness of ABA. I also saw it with my own son as after 4 years in ABA still had the core deficits ( Theory of mind)of Autism
I switched to RDI because I agreed more with a cognitive developmental approach to help my own children, ( with behaviorism my children learned instrumental functioning compared to experience sharing of intent), Again, this was a result of my own questioning. Just for the record, questioning can be uncomfortable, as we may need to adjust our thinking when all is said and done.
RDI is considered clinically proven and an effective emerging treatment for Autism. Yet, there is controversy between many behaviorists and Cognitive specialists. Why? Because any new thought threatens the previous way of thinking….and we as parents have to sort through that. It is the same with Doctors who see that more studies need to be done to ensure safe vaccines, compared to those who do not want to acknowledge these needed studies.
As a parent, I had to get educated on what each therapy offers my child and make an informed decision. This process did take time away from my children short term. This is why I appreciated what Andrew Wakefield said on Good Morning America today. When asked what he recommends from George ( and George actually did not interrupt him) Andrew Wakefield’s reply was to read…look at both sides of the argument/options ( there are two sides), Get informed, talk to a sympathetic Pediatrician ( aka open minded)…certainly good advice no matter how you look at it.
It appears to me, this has been the problem all along. We are never really encouraged to do this except from those who know the information will speak for itself. We are *told* to vaccinate and that the risk is small. I have never heard a vaccine company suggest that we become educated on both sides even though there is a risk that my child could die from a vaccine. We are just told it is a small risk. For the thousands of families last year who have lost children to vaccines, I bet they did not feel that their loss was small. Yes, losing a child to a vaccine and losing a child to an illness are equally tragic, BOTH are preventable!!
What is needed in both the case of vaccines and in the choice we should have in the treatment of autism is to realize that we don't need to be adversarial or take sides. Asking questions doesn't have to be a "bad" thing. I asked questions and am educated in both behavioral and cognitive therapy. All throughout history we can see that by continually asking questions and challenging what we know is how advances are made. When we don't continue to ask questions and raise the bar, we are only hurting ourselves....and our children.
Can we *finally* learn something from History??
Kathy
So here are some of my musings of the current events these past few weeks!! Last week was Anderson Cooper, this week, Good Morning America ( and its only Monday!). Of course in between were countless interviews with Doctors, parents, reporters, etc…on both sides of the issue. And that issue is- Do Vaccines cause Autism?
Andrew Wakefield could not have been clearer, along with most people who spoke on the subject from both sides of the issue. The answer is, we don’t know. Even Doctors who claim that there is no connection admit the problem is, we simply don’t know what causes Autism! To me, well, if we don’t know, we cannot rule out anything without intense, non biased studies ( the studies where people are truly looking for the answer and not trying to disprove the other side) Intent is a huge factor within research and can have a huge impact on what is*FOUND* in research! We need studies that are not funded by the interest of the stakeholder!
Controversy always gets me thinking…and I tend to go back to History. I know that one of the quotes in the RDI book is from William James- “First, you know a theory is attacked; then it is admitted to be true, but obvious and insignificant; Finally it is seen to be so important that its adversaries claim that they themselves discovered it”
My own children who were diagnosed with Autism are now just about 14 and 10. I have been around long enough to see the tides turn within all kinds of opinions.
So since this is my blog, I wanted to share some of how I got to where I tend to take my mind when people are talking about something *new* something out of mainstream, and/or something controversial. I will try and keep this as short as possible, so if I miss something it is not because I did not want to talk about it. I am also in the unique position because I have two children diagnosed on the spectrum, One who was Diagnosed with Regressive Autism, and the other with Infantile Autism. Yes, there is a difference. And I also have two Neuro typical children. This is important because Autism is not triggered by one isolated incident but rather a perfect storm of genetics and/or environmental triggers. I am no doctor but I would think that being able to assess a child’s immune system, along with family history of allergies, etc could go an incredibly long way in making progress with pinpointing how to head off that trigger for each child who would be susceptible to regressive Autism. At the least it would be much more productive then trying to dismiss that Autism and Gastro immune issues co- exist in 70 percent of children with Autism as irrelevant. Remember the quote in the beginning of the blog. Keep in mind that there are doctors on both sides of the issues. A look at history tells us that Mainstream medicine focuses on understanding problems from the perspective of the stakeholders involved and then applying information and other technologies as needed. This serves us well in some cases, and in other cases it is a hindrance to, well…truth. It does this because the stakeholders have A LOT to lose
Since we are talking about Autism, I am going to use the my experience with two interventions the same way I look at what is currently in the news with Andrew Wakefield. I do this because as a parent, I needed to be doing something for my kids. Don’t get me wrong, effective research is vital in understanding Autism, but equally important is understanding effective long term treatment for our kids. After all, they are all going to grow up to be adults so this effects our entire society, not just those of us who have children on the spectrum.
Starting with Behaviorism we know that Dr Lovaas started his work in the early 1960’s. In 1965 there was a published article in LIFE regarding his * new treatment*
http://neurodiversity.com/library_screams_1965.html
My purpose is not to discuss this article in detail, but to merely continue to show the progression of research. Of course one might note that this article had to have drawn some criticism! One group maybe criticizing for not putting these children away and another group criticizing the methodology. Some parents saying how could the *other * parents let this be done to their children, while those parents were grateful that through behaviorism their child’s needs and wants could be voiced.
Backing up to see Dr Lovaas influences, In 1904 Pavlov won the Nobel prize for his work in conditioning. From the early 19th century and the early 20th Century behaviorism gained popularity among many philosophers. Dr Lovaas based some of his work on the studies of Ivan Pavlov and BF Skinner to apply conditioning/Behaviorism to help children with Autism. Before that period work was very limited for Autism/mentally handicapped children, even though behavioral techniques were being used in other fields for managing behaviors like addiction, etc. Let’s face it, after a long day we all reward ourself with a treat, etc. In these instances, we already have the social foundations of reading non verbal cues and perspective.
Dr Lovaas started his work in the 60’s. The article above just documented what he was working on ( 1965) yet it was not until the 70’s that he started actual research, which resulted to his first research paper published in 1987. This is an estimation of about 20 + years of research before the first study was published, and going back further before a connection was made that behaviorism could benefit mentally handicapped children. Ultimately, Dr Lovaas was the pioneer who was able to help parents by giving them the choice to not have to put their children in institutions, which was typical and recommended at the time. Looking back on History, I think it is safe to say that in the years from 1960 through 1987 there were many parents who could of taken advantage of behaviorism to help their children learn rote skills…but it was controversial. The Norm was institutionalization.
Keeping this in mind, take a look at the following video- Personally, while I watched this video for the 4th time, I could not help but think of the Mom. Would she of had to stand up against the Norm to keep her baby out of an institution? As parents, we know she could never forget!! It is heartbreaking to even think about!!
http://www.cbsnews.com/video/watch/?id=7096537n&tag=related;photovideo
How different would the conversation be with her doctor if this happened today? Really. Would it really be all that different?? The players may be different but the story is the same.
It took one man( Dr Lovaas, ) over 20 years to even start to put a dent in the fact that our children could learn. No, he did not have all the answers… but he had questions. Questions that he was willing to explore that went against conventional mainstream recommendations.
I could not help but think how we, as a society tend to repeat our mistakes. History repeats itself if we do not learn its lessons.
We know Molly’s Mom was told to put her away. Was she given any other options? Was she told about any *emerging treatments?* Was she educated on all her options?
Fast Forward from that study from Dr. Lovaas in 1987, a few years to the 1990’s.
Dr Gutstein , through his work as a clinical researcher, program developer, therapist and teacher, based his work on helping our children on the spectrum alongside those in the field, but unlike Lovaas, based his work in part with the cognitive revolution which became popular in the second half of the 20th century. As the understanding of the human mind evolved, so did philosophies. He saw the cognitive advances in Therapies and knew that again, they were not being applied to Autism. Did he know for sure that cognitive therapy would benefit children with autism when he started? No...but just as Dr. Lovaas questioned whether those with autism could learn and therefore not have to be institutionalized, Dr. Gutstein questioned whether it was possible to not only teach those with autism basic skills but to use cognitive therapy to improve their theory of mind and raise the bar. Obviously the work of Skinner and Pavlov that behaviorism is based on differs from the theory of cognitive development which is in part based on the work of Piaget and Vygotsky when it came to mindfulness and the ability to obtain theory of mind, The more we learn about the mind, the more we can adjust to what is truly helpful in the long term. Dr Gutstein had questions too …and challenges that Autism effects development and if you address theory of mind, you remediate Autism. Behaviors are merely a byproduct of the lack of intersubjectivity that our kids have. Addressing behaviors are sometimes a necessary compensation, but not a long term solution. This is evidenced by no long term studies concerning the effectiveness of ABA. I also saw it with my own son as after 4 years in ABA still had the core deficits ( Theory of mind)of Autism
I switched to RDI because I agreed more with a cognitive developmental approach to help my own children, ( with behaviorism my children learned instrumental functioning compared to experience sharing of intent), Again, this was a result of my own questioning. Just for the record, questioning can be uncomfortable, as we may need to adjust our thinking when all is said and done.
RDI is considered clinically proven and an effective emerging treatment for Autism. Yet, there is controversy between many behaviorists and Cognitive specialists. Why? Because any new thought threatens the previous way of thinking….and we as parents have to sort through that. It is the same with Doctors who see that more studies need to be done to ensure safe vaccines, compared to those who do not want to acknowledge these needed studies.
As a parent, I had to get educated on what each therapy offers my child and make an informed decision. This process did take time away from my children short term. This is why I appreciated what Andrew Wakefield said on Good Morning America today. When asked what he recommends from George ( and George actually did not interrupt him) Andrew Wakefield’s reply was to read…look at both sides of the argument/options ( there are two sides), Get informed, talk to a sympathetic Pediatrician ( aka open minded)…certainly good advice no matter how you look at it.
It appears to me, this has been the problem all along. We are never really encouraged to do this except from those who know the information will speak for itself. We are *told* to vaccinate and that the risk is small. I have never heard a vaccine company suggest that we become educated on both sides even though there is a risk that my child could die from a vaccine. We are just told it is a small risk. For the thousands of families last year who have lost children to vaccines, I bet they did not feel that their loss was small. Yes, losing a child to a vaccine and losing a child to an illness are equally tragic, BOTH are preventable!!
What is needed in both the case of vaccines and in the choice we should have in the treatment of autism is to realize that we don't need to be adversarial or take sides. Asking questions doesn't have to be a "bad" thing. I asked questions and am educated in both behavioral and cognitive therapy. All throughout history we can see that by continually asking questions and challenging what we know is how advances are made. When we don't continue to ask questions and raise the bar, we are only hurting ourselves....and our children.
Can we *finally* learn something from History??
Kathy
Monday, November 8, 2010
The Dance of Parent and Child
The Cradle of Thought- Chapter two
“First there is initiation on the parents part, then a phase of mutual orientation when the infant is neutral or bright faced in expression and as the mother shifts to smooth vocalizations. Then a greeting where the baby smiles and moves limbs and the mom becomes more animated. Next is play dialogue when the mother talks in brief bursts with pauses and then the baby vocalizes, then the mother responses with changes in facial expression or further talk etc then the infant looks away, neutral or sober the engagement has been broken until next time.”
There is nothing sweeter than a baby….it is funny to watch *grown ups* with serious faces approach a baby and all the sudden they are smiling and making goofy faces! An important thing in that interaction that I took for granted is the co regulation as described above! You don’t think about those intuitive processes if development is following a typical path! Once my 2nd son and then my 3rd son were diagnosed with Autism, I knew all too well not to take anything about development for granted!! Those co regulatory actions would bring me to tears ( as my kids on the spectrum started to *get it*)
The following study was done in the 70’s and is so relevant to our kids! This is the starting point to where most of our children on the spectrum fall off the typical path of development. We must start there again, in a more deliberate, step by step process. Please read about the study HERE
You can’t help but see the importance of *feedback* in an interaction. So of course it makes sense that Hobson starts at this co regulation. This skill is present in infants and is the basis of their social foundations ( like perspective taking)! Makes even more sense that any Autism treatment should start at the beginning!! Restoring a child’s trajectory path would involve actually knowing what the original path was….when you want to restore something you want to take it back to the original. I wanted my children to be defined by who they are…not by their Diagnosis! Some incredible Ah ha moments happened on the way! One important revelation was until recently ( the last 10 years) the research done with children never transferred to how to best help our children on the spectrum. It was mostly based on behavioral techniques that work in the animal kingdom and even with us ( yeah…like…. what you YOU do for a Klondike bar ?) But the difference is, WE have the social understanding and our kids on the spectrum do not. This is why behavioral techniques are simply compensations to the bigger issue at hand! Updated studies looking at development and understanding that behaviors are just a manifest of what was lacking in development. Here is one study concerning a child’s that takes a look at development…
http://www.nytimes.com/2010/11/02/health/02autism.html?_r=1
If we are going to be diagnosing children earlier on the spectrum , this notion of giving them skills without understanding the cognitive function of the skills is just building on an incomplete foundation. Obviously the earlier we can Diagnose a child, the more it makes sense to look at their developmental trajectory.
On pages 35 and 36 of the Cradle of thought ( continuing on co Regulation)- Never is the one partner causing the other to do something. One musician does not cause the other to play a note. In the same manner neither the mother nor the infant causes the other to greet or to attend. They are mutually engaged and both participants modify their actions in accord to the feedback they receive from their partner ( intersubjectivity).
My own children used to think of me for an instrumental purpose. They wanted their needs met. They are hungry or thirsty. Everything is about them ( ever want to say to someone, its all about you huh!) well with Autism, their neurology really makes that statement true. ..Dont get me wrong, they were affectionate then, but they could never really share with me their thoughts…I always wanted to know what was going on in their head!! My Perspective or Emotion do not resonate with meaning for them!. The * Personal engagement* and their ability to take on my perspective as well as understand theirs, was crippled in our interactions!!
In Michelle Garcia Winners’ book, Thinking about you, Thinking about me, she talks about what Social skills are. “If we understand that social skills involve social adaptability and the related social interpretation of others’ thoughts and desires, we realize how essential these skills are for not only interactions, but for situations such as quietly sharing space in a classroom or when working on a job”..She continues to say that “Our students ( children with ASD) tend to believe that the interaction is taking place for their own personal enjoyment and not for the mutual enjoyment of the group….they fail to realize they are always sending some form of communication when they are in close proximity to others.”
She makes note in her book “ Dr Gutstein, author of Autism Aspergers Solving the Relationship Puzzle, does an excellent job recognizing the basic attributes that serve as precursors for social relationships.”
Kudos to Ms. Winner for being a professional who *gets* that our children’s success is more than academic knowledge. Their success depends on their ability to be effective communicators, critical thinkers, and their dynamic ability to relate to others in this social world!
For that dynamic ability-Think about our own relationships…our interactions are a bunch of *misalignments* that need to be repaired as we conversate. Talking over someone else…that thought process. We are trying to regulate our feelings and emotions. Our relationships are built on understanding this back and forth interaction and the *why* of it. Our children are no different. Our children with ASD don’t have this piece. What then happens as with human nature is we start to overcompensate for this social deficit. I know I did…for YEARS! Bombarding my children with questions….trying to get them to learn as many skills as possible thinking that somehow that will transfer.
When my son was 8 it was apparent nothing was going to transfer and while he was *academic*smart, and could do just about any skill, he absolutely lacked the co regulation of relationships. This in turn made it difficult for him to understanding friendships, and most things about the social world.
So much of “The Cradle of thought” truly helped me to have a glimpse of the struggles that my children faced with that regulation repair!
On pages 38-39-two and three month olds were put in front of the television The screen shows the infants mother on screen looking towards the infant. The mother was facing the camera sitting in another room and she could also see the baby. Mother and baby were able to engage with each other in a very fluent manner. Then a disruption was introduced...there was a 30 second delay between events and THE two ends of the video cameras. When the baby watched the video camera she could see her mother responding to her actions 30 seconds before. This meant that the mother’s actions were not in tune with what the infant was currently expressing. This effect caused infant distress. It is not that the infant felt unattended, as the mother was attending.. but that the interactions were not intune
Reflecting on this, wow, lack of co regulation is huge with typical children! We, as parents do it so intuitively ( respond to our children)..so when a response is off and not in tune, like with Autism, it is a scary domino effect to the regulation.
Infants are highly tuned into people from the start. They have an active social life. It is unusual for people to be unengaged..even those who are shy. People who are shy are still thinking about the other person, etc
On pages 50 and 51, Hobson talks about the *inter* personal engagement effects…a study with different children with ASD He did his best to be relaxed and engaging to both children on the spectrum but saw through video that he was less outgoing and more hesitant with the children who did not interact.
This is so true to be our human nature….if I am talking and someone appears disinterested, the thoughts in my mind are like, alrighty, they aren’t listening and don’t care! C yaaaaa…
He ends the chapter with explaining that we all have the basic human response to express our feelings to one another… a response that is more basic in thought. If someone lacks the basic direct access to the mental life of others, how would someone arrive at an understanding that people have minds? How would their thinking be affected? There are forms of interpersonal engagement that happens before thought…Could it be that such engagement also provides the basis for thought. I say, absolutely! Every child can reach this engagement if given the *map* of their own developmental misstep…
I know for our family, Once my children mastered this engagement, their social understanding was able to be built upon a solid foundation of development…which returned them to that track…and more importantly, to me!!
I will never look at typical development as *simple* again!
How about you?
Kathy
“First there is initiation on the parents part, then a phase of mutual orientation when the infant is neutral or bright faced in expression and as the mother shifts to smooth vocalizations. Then a greeting where the baby smiles and moves limbs and the mom becomes more animated. Next is play dialogue when the mother talks in brief bursts with pauses and then the baby vocalizes, then the mother responses with changes in facial expression or further talk etc then the infant looks away, neutral or sober the engagement has been broken until next time.”
There is nothing sweeter than a baby….it is funny to watch *grown ups* with serious faces approach a baby and all the sudden they are smiling and making goofy faces! An important thing in that interaction that I took for granted is the co regulation as described above! You don’t think about those intuitive processes if development is following a typical path! Once my 2nd son and then my 3rd son were diagnosed with Autism, I knew all too well not to take anything about development for granted!! Those co regulatory actions would bring me to tears ( as my kids on the spectrum started to *get it*)
The following study was done in the 70’s and is so relevant to our kids! This is the starting point to where most of our children on the spectrum fall off the typical path of development. We must start there again, in a more deliberate, step by step process. Please read about the study HERE
You can’t help but see the importance of *feedback* in an interaction. So of course it makes sense that Hobson starts at this co regulation. This skill is present in infants and is the basis of their social foundations ( like perspective taking)! Makes even more sense that any Autism treatment should start at the beginning!! Restoring a child’s trajectory path would involve actually knowing what the original path was….when you want to restore something you want to take it back to the original. I wanted my children to be defined by who they are…not by their Diagnosis! Some incredible Ah ha moments happened on the way! One important revelation was until recently ( the last 10 years) the research done with children never transferred to how to best help our children on the spectrum. It was mostly based on behavioral techniques that work in the animal kingdom and even with us ( yeah…like…. what you YOU do for a Klondike bar ?) But the difference is, WE have the social understanding and our kids on the spectrum do not. This is why behavioral techniques are simply compensations to the bigger issue at hand! Updated studies looking at development and understanding that behaviors are just a manifest of what was lacking in development. Here is one study concerning a child’s that takes a look at development…
http://www.nytimes.com/2010/11/02/health/02autism.html?_r=1
If we are going to be diagnosing children earlier on the spectrum , this notion of giving them skills without understanding the cognitive function of the skills is just building on an incomplete foundation. Obviously the earlier we can Diagnose a child, the more it makes sense to look at their developmental trajectory.
On pages 35 and 36 of the Cradle of thought ( continuing on co Regulation)- Never is the one partner causing the other to do something. One musician does not cause the other to play a note. In the same manner neither the mother nor the infant causes the other to greet or to attend. They are mutually engaged and both participants modify their actions in accord to the feedback they receive from their partner ( intersubjectivity).
My own children used to think of me for an instrumental purpose. They wanted their needs met. They are hungry or thirsty. Everything is about them ( ever want to say to someone, its all about you huh!) well with Autism, their neurology really makes that statement true. ..Dont get me wrong, they were affectionate then, but they could never really share with me their thoughts…I always wanted to know what was going on in their head!! My Perspective or Emotion do not resonate with meaning for them!. The * Personal engagement* and their ability to take on my perspective as well as understand theirs, was crippled in our interactions!!
In Michelle Garcia Winners’ book, Thinking about you, Thinking about me, she talks about what Social skills are. “If we understand that social skills involve social adaptability and the related social interpretation of others’ thoughts and desires, we realize how essential these skills are for not only interactions, but for situations such as quietly sharing space in a classroom or when working on a job”..She continues to say that “Our students ( children with ASD) tend to believe that the interaction is taking place for their own personal enjoyment and not for the mutual enjoyment of the group….they fail to realize they are always sending some form of communication when they are in close proximity to others.”
She makes note in her book “ Dr Gutstein, author of Autism Aspergers Solving the Relationship Puzzle, does an excellent job recognizing the basic attributes that serve as precursors for social relationships.”
Kudos to Ms. Winner for being a professional who *gets* that our children’s success is more than academic knowledge. Their success depends on their ability to be effective communicators, critical thinkers, and their dynamic ability to relate to others in this social world!
For that dynamic ability-Think about our own relationships…our interactions are a bunch of *misalignments* that need to be repaired as we conversate. Talking over someone else…that thought process. We are trying to regulate our feelings and emotions. Our relationships are built on understanding this back and forth interaction and the *why* of it. Our children are no different. Our children with ASD don’t have this piece. What then happens as with human nature is we start to overcompensate for this social deficit. I know I did…for YEARS! Bombarding my children with questions….trying to get them to learn as many skills as possible thinking that somehow that will transfer.
When my son was 8 it was apparent nothing was going to transfer and while he was *academic*smart, and could do just about any skill, he absolutely lacked the co regulation of relationships. This in turn made it difficult for him to understanding friendships, and most things about the social world.
So much of “The Cradle of thought” truly helped me to have a glimpse of the struggles that my children faced with that regulation repair!
On pages 38-39-two and three month olds were put in front of the television The screen shows the infants mother on screen looking towards the infant. The mother was facing the camera sitting in another room and she could also see the baby. Mother and baby were able to engage with each other in a very fluent manner. Then a disruption was introduced...there was a 30 second delay between events and THE two ends of the video cameras. When the baby watched the video camera she could see her mother responding to her actions 30 seconds before. This meant that the mother’s actions were not in tune with what the infant was currently expressing. This effect caused infant distress. It is not that the infant felt unattended, as the mother was attending.. but that the interactions were not intune
Reflecting on this, wow, lack of co regulation is huge with typical children! We, as parents do it so intuitively ( respond to our children)..so when a response is off and not in tune, like with Autism, it is a scary domino effect to the regulation.
Infants are highly tuned into people from the start. They have an active social life. It is unusual for people to be unengaged..even those who are shy. People who are shy are still thinking about the other person, etc
On pages 50 and 51, Hobson talks about the *inter* personal engagement effects…a study with different children with ASD He did his best to be relaxed and engaging to both children on the spectrum but saw through video that he was less outgoing and more hesitant with the children who did not interact.
This is so true to be our human nature….if I am talking and someone appears disinterested, the thoughts in my mind are like, alrighty, they aren’t listening and don’t care! C yaaaaa…
He ends the chapter with explaining that we all have the basic human response to express our feelings to one another… a response that is more basic in thought. If someone lacks the basic direct access to the mental life of others, how would someone arrive at an understanding that people have minds? How would their thinking be affected? There are forms of interpersonal engagement that happens before thought…Could it be that such engagement also provides the basis for thought. I say, absolutely! Every child can reach this engagement if given the *map* of their own developmental misstep…
I know for our family, Once my children mastered this engagement, their social understanding was able to be built upon a solid foundation of development…which returned them to that track…and more importantly, to me!!
I will never look at typical development as *simple* again!
How about you?
Kathy
Monday, September 27, 2010
The Cradle of Thought- Chapter One
In the preface of the Cradle of though, Peter Hobson asks, when we watch a baby interacting with their caregiver, are we merely watching her body, or do we see her mental state? What is she experiencing?
What I enjoyed about this book was how Hobson bridges the mental life of babies with exploring the origins of thought and how this typical development is affected in our children with Autism.
If we look at the mental life of babies, we don’t see language. We do see communication in the form of social engagement that clearly is effective in communicating with words. This social engagement links us together, sharing one another’s perspective.
From page two, I quote “ Social engagement is what provides the foundations for language. Not only does it serve as a motive for language to appear in the first place, But in the structure of what is exchanged between one person and another…
We know all to well that children on the spectrum have a hard time communicating ( even if they are talking) So in essence, Autism shows us what happens when this Social engagement is developmentally missing. And this is the topic of the Cradle of thought.
I just want to say, this book was copyrighted in 2002. The founder of RDI ® took the information from this book, and others, to bridge the understanding of that breaking point that caused our children’s neurology to be affected. The *theory* was then researched for a functional solution to help our children. By making the core of the foundation of RDI about Social engagement and thinking ( not skills, or behaviors) we are in essence *remediating* the Autism itself and not just the behavior created Because of the Autism. I can mention here also that Mr Hobson is involved with numerous research studies for RDI and its effectiveness to get to the core of the deficit in Social engagement.
As we go through the chapters in this book, we will be exploring perspective. The ability to give our own and to share with another person. We are going to talk about Flexibility and imagination. Our *socialness* has a huge impact on cognitive development of the neurodevelopmental system. By the time our children are Dx, they have been struggling with this development! They are struggling with understanding Perspective!
On page 10 of Chapter one Mr. Hobson touches on mother and child. What I took from his words were the lack of meeting of hearts and mind that we, as mothers depend on. We need the back and forth communication. I remember with my own children being so excited for that first smile, that togetherness without saying a word. Waiting for that connectiveness or losing it with regressive Autism ( I have experienced both) was just crushing!! And not just once, but twice. The heartache was just unmeasurable when I think back!
He continues in his review, methods of clinical descriptions and touches on the ''compartimentalized brain'' theory. Where treatments have been tailored to specific regions of the brain- Not we'll work on language, now we'll work on social... They can't be separated, and as Hobson explains, it may cause more difficulty neurologically in terms of integration.
To restore a child’s developmental path we are not changing the child, we are restoring their developmental path. This is an important note because social engagement and thinking is a dynamic process which compliments each individual child’s personality. Restoring their pathway lets them be who they are without the additional struggle to understand the social world.
The connection within our own mind and how we perceive one another by thought and action is our “Social Engagement” When we look at how to help our own children, We need to grasp what typical look like within developing Social engagement to be effective in both short and long term goals.
Hobson ends the chapter with this quote-
And so we know our ultimate aim: to understand how nature dovetails the human infant’s innate capacity for social engagement with what a caregiver provides, and thereby creates an interpersonal cradle for the growth of symbolic thinking. P. 28
And so here we start..Understanding what goes right and then focusing on that to know how to help our kids with Autism!
Kathy
Upcoming- Join me for the next blog on Chapter two- Before thought.
What I enjoyed about this book was how Hobson bridges the mental life of babies with exploring the origins of thought and how this typical development is affected in our children with Autism.
If we look at the mental life of babies, we don’t see language. We do see communication in the form of social engagement that clearly is effective in communicating with words. This social engagement links us together, sharing one another’s perspective.
From page two, I quote “ Social engagement is what provides the foundations for language. Not only does it serve as a motive for language to appear in the first place, But in the structure of what is exchanged between one person and another…
We know all to well that children on the spectrum have a hard time communicating ( even if they are talking) So in essence, Autism shows us what happens when this Social engagement is developmentally missing. And this is the topic of the Cradle of thought.
I just want to say, this book was copyrighted in 2002. The founder of RDI ® took the information from this book, and others, to bridge the understanding of that breaking point that caused our children’s neurology to be affected. The *theory* was then researched for a functional solution to help our children. By making the core of the foundation of RDI about Social engagement and thinking ( not skills, or behaviors) we are in essence *remediating* the Autism itself and not just the behavior created Because of the Autism. I can mention here also that Mr Hobson is involved with numerous research studies for RDI and its effectiveness to get to the core of the deficit in Social engagement.
As we go through the chapters in this book, we will be exploring perspective. The ability to give our own and to share with another person. We are going to talk about Flexibility and imagination. Our *socialness* has a huge impact on cognitive development of the neurodevelopmental system. By the time our children are Dx, they have been struggling with this development! They are struggling with understanding Perspective!
On page 10 of Chapter one Mr. Hobson touches on mother and child. What I took from his words were the lack of meeting of hearts and mind that we, as mothers depend on. We need the back and forth communication. I remember with my own children being so excited for that first smile, that togetherness without saying a word. Waiting for that connectiveness or losing it with regressive Autism ( I have experienced both) was just crushing!! And not just once, but twice. The heartache was just unmeasurable when I think back!
He continues in his review, methods of clinical descriptions and touches on the ''compartimentalized brain'' theory. Where treatments have been tailored to specific regions of the brain- Not we'll work on language, now we'll work on social... They can't be separated, and as Hobson explains, it may cause more difficulty neurologically in terms of integration.
To restore a child’s developmental path we are not changing the child, we are restoring their developmental path. This is an important note because social engagement and thinking is a dynamic process which compliments each individual child’s personality. Restoring their pathway lets them be who they are without the additional struggle to understand the social world.
The connection within our own mind and how we perceive one another by thought and action is our “Social Engagement” When we look at how to help our own children, We need to grasp what typical look like within developing Social engagement to be effective in both short and long term goals.
Hobson ends the chapter with this quote-
And so we know our ultimate aim: to understand how nature dovetails the human infant’s innate capacity for social engagement with what a caregiver provides, and thereby creates an interpersonal cradle for the growth of symbolic thinking. P. 28
And so here we start..Understanding what goes right and then focusing on that to know how to help our kids with Autism!
Kathy
Upcoming- Join me for the next blog on Chapter two- Before thought.
Sunday, July 11, 2010
The Principle of Perspective part two
Joining me for this post is Dr Bob Sears. In addition to being a husband, father, and an incredible pediatrician, He is the Author of “The Autism Book” and the Director of TACA’s Medical Advisory Board. He is also on Facebook. :)
Hi Dr Bob, Thanks so much for joining me for the beginning of this series! I am very thankful for your book and how you present the Bio-medical information for our families…and for the fact that we can then take the information in the book to our own doctors! With that, I am curious on what made you decide to get more involved with *Autism* within your practice?
Dr Bob- Ten years ago a parent brought her daughter into my office and asked me to help her with some treatments for her child with autism. Her ideas sounded “crazy” to me at the time, but I’m open minded and like to help. So I started investigating what she wanted to do for her child and it made sense. I trained with some open pediatricians who were already treating autism, and the rest is history.
KD- On page 61, you wrote “I believe that parents should not wait around for the mainstream scientific world to tell them what to do for their child. Yes Science will give them the answer someday, but that day will come too late for those reading this” I love this statement Dr Bob, because it shows how there is a bridge that needs to happen between evidence based medicine and validating what parents and physicians see with their children and patients. Can you briefly talk about Leaky Gut and Vitamin, Mineral, and nutritional deficiency?
Dr Bob- Leaky gut occurs because the intestinal lining is so irritated by inflammation from allergies and bacterial/yeast overgrowth that it acts like a net with holes in it. The net is normally only supposed to let digested food into the body. Instead, larger particles of undigested food (which are more allergenic) and toxins (that normally should pass out in the stools) are absorbed into the body. Vitamin and mineral absorption is poor and the child can because deficient in various nutrients.
KD- Great, and I know you go into detail about Leaky gut in your book. I also wanted to ask questions about the first five supplements to start as you mention in your book.
Dr Bob- The five primary supplements that help replace what most kids with autism are deficient in (or that are designed to help improve the neurologic and metabolic deficits that exist in most kids with autism) are digestive enzymes (to help calm down the leaky gut), taurine (an essential amino acid needed for a variety of metabolic functions), omega-3 oils (which help with inflammation, gut function, and neurologic function), multivitamins/minerals (to replenish deficiencies), and probiotics (to help make the gut a healthier environment).
KD- I can really relate to your recommendations. Enzymes and Probiotics made a huge difference in my younger sons body chemistry! My younger son who is now 9, was also Diagnosed with Low muscle tone like so many of our kids. Can you review some of what is in your book concerning this?
Dr Bob– Many kids with autism have low muscle tone. This is hypothesized to be due, in part, to dysfunctional mitochondria (the “batteries” in each cell that generate the energy molecules each cell needs to function). Less cellular energy results in lower muscular function. Taking various supplements that help improve mitochondrial function may help with muscle tone and coordination. Supplements include various B vitamins, Co-Q 10, and L-acetyl-Carnitine.
KD-I do know many families struggle with ADHD too. What are your recommendations for supplements that improve cognitive abilities and attention.
Dr Bob – Antioxidants are the basic approach here. I like pycnogenol and quercetin, two plant-based compounds that are very potent anti-oxidants. These help improve the function of various brain chemicals that are needed for attention and focus.
Methyl B12 (most effective when given as shots) along with glycine (an amino acid) and folinic acid (the active form of folic acid) can also help.
KD- Thank you again for giving us a preview of the Bio-medical information in your new book. “The Autism Book”. You have a heart of Gold when it comes to helping families! I can only hope that more mainstream doctors are able to be open minded and listen to the research…and include the parents as part of the team like you do! You strike a balance of mainstream medicine and a natural approach for all children!
Speaking of balance, I was also able to listen to the Autism One conference on Ustream last month. I loved the different speakers and their perspectives. One quote that I loved was from Dr Kartzinel “We don’t treat Autism, we treat the underlying medication conditions associated with Autism”
Here is another doctor who *gets it.* With our children, there was a tipping point in their neurology that halted development. With each child, that point is unique.
We cannot just address the behaviors that our kids exhibit, we need to start building the foundations of that which was halted…typical development. Like a one -two punch. Another quote from Dr Kartzinel at the Autism one conference is “Nothing is a cure all, we need to build a foundation”
Just as important to our children’s biochemistry is our children’s developmental function. That foundation will be talked about in detail as we continue. We, as parents, want our kids to have a foundations for theory of mind! We want our kids bodies healed, and their minds!
RDI is a program that restores a child’s natural development path before Autism affected their neurology. Just as Bio medical treatments are effective for the underlying medication conditions associated with Autism, RDI is effective in treating the developmental core deficits that were halted in Autism. The goal of RDI is to go back to the precise point where the child stopped developing typically and systemically allow the opportunities for a second chance at these developmental milestones. RDI uses the model of typical development with the parent or caregiver guiding the child with intruistic motivation to improve self awareness, co regulation and experience sharing so they are no longer obstacles to the child. These theory of mind functions are extremely difficult for children on the spectrum. RDI has simply taken the research on the development of typical children and applied that research to help our children revisit what they could not get the first time because of Autism.
I know you mention RDI in your book Dr Bob. How did you first hear about Relationship Development Intervention?
Dr Bob- I originally heard about it from other pediatricians involved in treating autism as an adjunctive therapy for children with autism to help them improve their social abilities. I have since learned that it is much more than that.
KD- What do you generally tell your patients regarding RDI?
Dr Bob- I have started to recommend it more and more as a primary developmental therapy (just as OT is a primary therapy) for my patients with autism.
KD- That is great! This is so important because we want our kids to understand what we understand… the very core of what makes us *care* about why we act the way we do. We want to fill in those developmental milestones which will prevent gaps and regression as our children get older. Relationship Development Intervention is the remediation program that accomplishes this goal by allowing our children with Autism to have a second chance to make those discoveries they missed the first time. This gets them back on the track of typical development, where their continued growth then flows naturally. Biomedical intervention can be needed to treat the underlying causes of the initial tipping point. Simultaneously, RDI ® follows the cognitive developmental sequence from the effects of the halted functioning, and builds a strong neurological foundation.
This foundation, the ability to “think” will be our first chapter in “the Cradle of though”
Once again, thank you so much Dr Bob Sears. You are invaluable to all of us in the Autism Community!
For all who are reading- Please feel free to ask any questions during this series as we explore *thinking.*
KathyDarrow@autismremediationforourchildren.com
Hi Dr Bob, Thanks so much for joining me for the beginning of this series! I am very thankful for your book and how you present the Bio-medical information for our families…and for the fact that we can then take the information in the book to our own doctors! With that, I am curious on what made you decide to get more involved with *Autism* within your practice?
Dr Bob- Ten years ago a parent brought her daughter into my office and asked me to help her with some treatments for her child with autism. Her ideas sounded “crazy” to me at the time, but I’m open minded and like to help. So I started investigating what she wanted to do for her child and it made sense. I trained with some open pediatricians who were already treating autism, and the rest is history.
KD- On page 61, you wrote “I believe that parents should not wait around for the mainstream scientific world to tell them what to do for their child. Yes Science will give them the answer someday, but that day will come too late for those reading this” I love this statement Dr Bob, because it shows how there is a bridge that needs to happen between evidence based medicine and validating what parents and physicians see with their children and patients. Can you briefly talk about Leaky Gut and Vitamin, Mineral, and nutritional deficiency?
Dr Bob- Leaky gut occurs because the intestinal lining is so irritated by inflammation from allergies and bacterial/yeast overgrowth that it acts like a net with holes in it. The net is normally only supposed to let digested food into the body. Instead, larger particles of undigested food (which are more allergenic) and toxins (that normally should pass out in the stools) are absorbed into the body. Vitamin and mineral absorption is poor and the child can because deficient in various nutrients.
KD- Great, and I know you go into detail about Leaky gut in your book. I also wanted to ask questions about the first five supplements to start as you mention in your book.
Dr Bob- The five primary supplements that help replace what most kids with autism are deficient in (or that are designed to help improve the neurologic and metabolic deficits that exist in most kids with autism) are digestive enzymes (to help calm down the leaky gut), taurine (an essential amino acid needed for a variety of metabolic functions), omega-3 oils (which help with inflammation, gut function, and neurologic function), multivitamins/minerals (to replenish deficiencies), and probiotics (to help make the gut a healthier environment).
KD- I can really relate to your recommendations. Enzymes and Probiotics made a huge difference in my younger sons body chemistry! My younger son who is now 9, was also Diagnosed with Low muscle tone like so many of our kids. Can you review some of what is in your book concerning this?
Dr Bob– Many kids with autism have low muscle tone. This is hypothesized to be due, in part, to dysfunctional mitochondria (the “batteries” in each cell that generate the energy molecules each cell needs to function). Less cellular energy results in lower muscular function. Taking various supplements that help improve mitochondrial function may help with muscle tone and coordination. Supplements include various B vitamins, Co-Q 10, and L-acetyl-Carnitine.
KD-I do know many families struggle with ADHD too. What are your recommendations for supplements that improve cognitive abilities and attention.
Dr Bob – Antioxidants are the basic approach here. I like pycnogenol and quercetin, two plant-based compounds that are very potent anti-oxidants. These help improve the function of various brain chemicals that are needed for attention and focus.
Methyl B12 (most effective when given as shots) along with glycine (an amino acid) and folinic acid (the active form of folic acid) can also help.
KD- Thank you again for giving us a preview of the Bio-medical information in your new book. “The Autism Book”. You have a heart of Gold when it comes to helping families! I can only hope that more mainstream doctors are able to be open minded and listen to the research…and include the parents as part of the team like you do! You strike a balance of mainstream medicine and a natural approach for all children!
Speaking of balance, I was also able to listen to the Autism One conference on Ustream last month. I loved the different speakers and their perspectives. One quote that I loved was from Dr Kartzinel “We don’t treat Autism, we treat the underlying medication conditions associated with Autism”
Here is another doctor who *gets it.* With our children, there was a tipping point in their neurology that halted development. With each child, that point is unique.
We cannot just address the behaviors that our kids exhibit, we need to start building the foundations of that which was halted…typical development. Like a one -two punch. Another quote from Dr Kartzinel at the Autism one conference is “Nothing is a cure all, we need to build a foundation”
Just as important to our children’s biochemistry is our children’s developmental function. That foundation will be talked about in detail as we continue. We, as parents, want our kids to have a foundations for theory of mind! We want our kids bodies healed, and their minds!
RDI is a program that restores a child’s natural development path before Autism affected their neurology. Just as Bio medical treatments are effective for the underlying medication conditions associated with Autism, RDI is effective in treating the developmental core deficits that were halted in Autism. The goal of RDI is to go back to the precise point where the child stopped developing typically and systemically allow the opportunities for a second chance at these developmental milestones. RDI uses the model of typical development with the parent or caregiver guiding the child with intruistic motivation to improve self awareness, co regulation and experience sharing so they are no longer obstacles to the child. These theory of mind functions are extremely difficult for children on the spectrum. RDI has simply taken the research on the development of typical children and applied that research to help our children revisit what they could not get the first time because of Autism.
I know you mention RDI in your book Dr Bob. How did you first hear about Relationship Development Intervention?
Dr Bob- I originally heard about it from other pediatricians involved in treating autism as an adjunctive therapy for children with autism to help them improve their social abilities. I have since learned that it is much more than that.
KD- What do you generally tell your patients regarding RDI?
Dr Bob- I have started to recommend it more and more as a primary developmental therapy (just as OT is a primary therapy) for my patients with autism.
KD- That is great! This is so important because we want our kids to understand what we understand… the very core of what makes us *care* about why we act the way we do. We want to fill in those developmental milestones which will prevent gaps and regression as our children get older. Relationship Development Intervention is the remediation program that accomplishes this goal by allowing our children with Autism to have a second chance to make those discoveries they missed the first time. This gets them back on the track of typical development, where their continued growth then flows naturally. Biomedical intervention can be needed to treat the underlying causes of the initial tipping point. Simultaneously, RDI ® follows the cognitive developmental sequence from the effects of the halted functioning, and builds a strong neurological foundation.
This foundation, the ability to “think” will be our first chapter in “the Cradle of though”
Once again, thank you so much Dr Bob Sears. You are invaluable to all of us in the Autism Community!
For all who are reading- Please feel free to ask any questions during this series as we explore *thinking.*
KathyDarrow@autismremediationforourchildren.com
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