Autism remediation for our children

Part two, A statement of Hope

2012-01-22T00:27:00.004-05:00

Part one ( Click here) is my Mission preview for my then 7 year old…7 years ago. I did one for 2 years, 7 years and 15 years. MY mission preview then, was centered around my son understanding his social world, how to navigate friends and understand other perspectives. When I wrote this mission preview, he was attending a school for children on the spectrum. He had gone there the year before because his behaviors had gotten to where his placement had to change, because what I knew at the time, was not a good match. There were times when his aid would need to restrain him..and this was my wake up call. I needed to do something ELSE for him. The typical route at the time, behavioral conditioning, was not giving him the long term tools he needed…he had lots of skills, but not much else.

As I read over my old previews, I could only say .... mission statement fulfilled. I have blogs about the how to, and my story…and what is RDI click here so I wanted to make this post more about celebrating the ability to understand friendships…and understanding the importance of thinking ahead to *get back* what our kids need. A celebration of not only my son overcoming the obstacles that Autism presents, but the many other children and families who are in this journey... It is quite a journey that we, as parents can instantly relate too with one another!

So why do I think a mission preview is important in this process? For me, it kept me focused on my goals for my kids. There are short term goals and long term goals…and without a mission…I was getting caught up in the reaction of all the short term issues. I was trying to *get* things to happen, or fix a behavior. Of course necessary, but sometimes thinking long term helped take me out of reaction mode and into proactive mode. I started to look at what my kids needed, as what was missing instead of how to put a band-aid on what they were *doing* at the time.

So as I took my 7 almost 8 year old on a new journey with Relationship Development Intervention, I was able to renew my mindset on what we, as a family needed to achieve. Going through those stages within RDI, each one filling in crucial developmental milestones, worked on both sets of goals, and both kinds of intelligence here…which led my son to the place where he is, a place where he can be in that group of teens, nominated on the snow court.

As I lay awake that night, thinking, I remembered all that the past *inflicted* upon me. 11 years ago Autism was not as common, and in some ways we have come a long way and others we are still stuck in the same old same old. What would have happened if we did not make that change when he was 7? I definitely know we would not be here…I would not be watching him with his friends, as they come over, as he goes over their house… as he attends dances, and is part of the student council. All that my son is doing now, 7 years ago, I was not sure he could get there. Like any mom, I wanted so much for my son to understand relationships. We had a good relationship, but out in the social world, so much MORE is needed in understanding. 14 and 15 year olds do not compensate...they expect you to be on equal playing ground. Thinking ahead to get back would be crucial! Instead of me trying to give him social skills to try and teach him every possible way to handle a conversation ( an impossible task), I instead learned that I needed to address things like resilience, perspective, and true meaningful communication, which was just the beginning. To be able to hold his own with friendships and relationships, communication skills and being able to take a chance are two must haves, along with knowing how to help the other person know we are interested in what they are saying .all the while insuring that our gaze to them shows us this. Yikes, where to start. Friendships do not start in a bubble. Infants are learning resilience which are the building blocks to trust, then grasping the back and forth of communication. Two years olds are already learning how to blend their way of seeing things with our way…which is why it’s called the terrible twos. The ability to understand friendships are grounded back …in development. I had to go back and give my sons that second chance at mastering this, before we could make any real progress.

Maybe your mission preview would read differently. No two are alike…but I encourage you to write it on paper. Visualize where your child needs to be in 2 years, 7 years, 15 years. Then base your goals on what your mission is for your child. This will prevent you looking at your 20 year old …wondering where the time went, faced with the hard truth that skills got them through school…but now what? Start addressing the now what?....NOW! Its never too early nor too late to restore your child’s developmental path to dynamic intelligence!

For more on friendships- Click here

More of my story is here

A mission statement of hope….first believing, then seeing

2012-01-21T23:51:00.001-05:00

Today, since we got snow and Im sitting here sipping coffee, I figured I would share one of the highlights from early December...better late then never !
Last month, my son, who is now 14 told me that I was allowed to come to the snow dance at school ( He is a freshman in high school) and take pictures. Anyone with a 14 year old understands the term allowed. He told me that all the parents would be there at 9 to take pictures of the snow king crowning ( sort of like homecoming). Of course I was like ok…then he mentioned to me that he is in the snow court so I might want to get there alittle earlier. My response was…uh, what? He stares at me and says, Yeah Im in the snow court and walks away. So as I’m standing there, frozen, watching him walk upstairs as if it is no big deal, my first thought is, well, ok Im not sure how this whole snow king thing works so I guess Ill find out when I go.

3 days later the snow dance has arrived, and Im at a friend’s house ( a ball party). I knew I would need to leave at 9 to run to the school, then come back to resume Moms night out. As I am driving to the school I get a call from my son, who wants to know where I am. It is 3 minutes to 9 ( gosh, what does he think, I’m always late or something?? J) So I park, run in and as I enter the hallway, he is in the middle of a group of 10 kids, 5 boys and 5 girls, getting various pictures taken, They are all wearing a sash. I take a picture of them all together, just in time for them to line up for the DJ to start calling their names as couples…as nominees for the snow king. I walk into the dance floor…turn around and everything is going in slow motion. The DJ starts to announce the nominees…and each time the boy and girl walk through the doors and the crowd of kids cheer. The DJ announce my son with the young lady nominee, and he walks through the line as the kids cheer. Im only able to get a picture of the end as there are just so many teenagers blogging my view ( move it Mom here trying to take a picture!! Geez)

They all walk up to the stage and are given flowers..and told to open the card and the card says whether they won king and queen or not. I watch and these 10 teens open their cards, and the crowd cheers as two come forward excited that they won. No, my son did not win…but I still could not take my eyes off him. He then came over to me, I got a few pictures of him with his nominees and also with his date to the dance, and then I left. I got into the car and just sat there, trying to compose myself as I was heading back to my party. I did, and returned, and then came home and stayed up all night…pretty much sitting by the computer or on the couch. At some points I wept, because as I could not sleep, his entire childhood up to this point flashed before my eyes. I just kept coming back to the night, where his peers/classmates choose 5 boys to represent the class, 5 boys who were the most popular…and my son was one of them. Now typically this is just a general feel good moment for any Parent, but to me, and our family this moment is a significant milestone… because around the age of 7, I wrote a mission preview for my son as part of an assignment … with my RDI consultant ( we were just starting RDI with my son at the time) A mission preview is also a concept listed in the book, 7 habits of highly effective people, under, habit 2, begin with the end in mind. Here it is-

2. Intermediate-Term Mission Preview: 7 years from now

14 years old- Sleepover

N knocks on the door of the youth group leaders house. S opens the door and is thrilled to see N was able to make it.

" Hey guys, I'm here, let the party begin" utters N as he makes his way over to the pool table. He instantly begins talking to a few of his friends about the night before and how a bunch of them got together and went to the hockey court to play a few games. They begin to play pool and N is one of the last three kids playing. He misses a ball and with that laughs and walks over to some of his friends. "Did you see that new movie yet N?" remarks one of his friends. "No, not yet," says N, "hey lets get a group together next weekend and go see it." They all agree. N notices a more quiet boy sitting around the group and also asks him about going to the movies. They start a conversation and N finds out that this boy just started coming out to church. He brings him into the group and makes him feel welcome. At this point the boys gather around for a lesson from. S. S talks about the pressures of approaching the teenage years and N and his friends have a great conversation with S about the challenges they face in their social life. S also introduces the new boy.

N has already met so and so and is helping him feel right at home."S comments" "I see that
but for anyone who has not gotten the chance to introduce yourself, make sure you do! They boys stay up till the wee hours of the morning eating and talking about everything boys talk about!

continued here

the two faces of anxiety

2011-12-15T18:18:00.004-05:00

The fragile growth of the mind- Chapter 5 The cradle of thought

In this chapter, Mr Hobson looks at the growth of the mind and the different roles parents take, and how development unfolds. When I was finished reading this chapter, I concluded that the growth of the mind is definitely FRAGILE! For our kids on the spectrum, we are literally rebuilding their mind. What we want to make sure that we are doing is rebuilding their mind in a developmental sequence!

I am going to take a few things from this chapter to springboard on the topic of Anxiety. I am doing this because the chapter goes into detail about the parent/child relationship, how no two caregivers are alike, obviously, and the many factors that are taken in with child development. There are many components to the nurture part of our parenting, but because Autism comes along, that all gets turned on its head. The LACK of reaction from our babies and toddlers set us up for a spiral of different emotions and reactions to what is going on with our kids. Obviously our anxiety level is through the roof as we feel *lost* in how to *help*. Our days can become all about preventing anything that would set out child *off*. We become super parents because we can determine what is needed ahead of time in the hope that all will stay right in the world IF we can forecast every possible situation that could occur…and own it so we can control the outcome!

In essence, I am going to base much of what I am writing for Chapter 5 on a sentence on the first page of Chapter 5. " In order to understand and perhaps help with difficulties in parenting a baby, we need to find out what creates and what Militates against harmonious relationships." As always, I recommend you read the "The cradle of thought" by Peter Hobson as I am just taking a piece of the chapter and talking about a specific topic.

So the question- What creates a harmonious relationship? And what force influences against a harmonious relationship? Huge question…That could go on forever! Thankfully I only want to talk about the foundation…the basics…the VERY beginning of this concept. In others words, what creates a harmonious relationship between a baby or toddler and their caregiver/parent. To know what creates this harmony , then what influences, can give us the answer to help when the relationship is not in place.

Thankfully, when relating this information to Autism, we are learning more and more how to help our kids. Cutting edge therapies based on relationships far exceed the previous notion that our children are just a sum of their behaviors. That said, behaviors do matter! With both a behavioral approach to Autism or a developmental approach, success is noted by the Behaviors of the child. The difference is of course, knowing the foundations that are needed for the understanding of relationships, part of dynamic intelligence, compared to static intelligence which is rules and rote information.

When I visualize my baby or any baby, those first few weeks the harmony comes from supplying their need. Meanwhile, we all as parents were awaiting that first connection…going from you give me food to Hey well… Hi there. The first smile that we refuse to believe is gas! The lack of sleep, pain, it is worth it for the feeling we have when the *relationship* starts. Couple the relationship piece with giving our children their needs…and you have the makings of trust and security. Those two topics will be for the next chapter because for right now, we are concentrating on the breakdown of the *relationship*, caused by Autism. Infantile Autism or regressive Autism alike, are both linked to the breakdown of relationship, just at different ages.

What I LOVE about exploring the origins of thinking, is that we can ask ourselves questions like, ok so, what takes a relationship to the next level….in the most basic form!? For me, the answer to that question is something inside me, allows me to take the relationship further, ANY relationship. It has NOTHING to do with the other person…YET. Some of you may have guessed already…its resilience! Resilience is the ability to recover quickly from change. With babies, we know not to overwhelm them…to build up their resilience. We know that the back and forth goo goo and gaa gaa is creating in them resilience that we answer them when they are with us…that there is that back and forth. BUT take an environment that is overwhelming, noisy, etc and their lack of resilience is hard to miss ( a screaming child). I know I keep repeating myself, but we all know that a screaming baby means an overwhelmed baby. Within typical development, this *uncertainty* actually builds up resilience ( as long as it is not extreme). Most of you can relate that we can give the Mom a reassuring look when her baby is screaming, overwhelmed, etc.

Here’s the thing, for our children with Autism, their *state* of uncertainty did not build resilience for them when they were younger..it has the complete opposite effect. It makes them crave sameness…in an effort to prevent the uncertainty that is just too scary. On page 142, “ There is so much that a young child acquires through others that there are real disadvantages for the infant or toddler who is unable or unwilling to engage with other people in their dealing with things.”

Of course we, as parents of children with Autism, understand this difficulty. Taking it that step further, understanding resilience, and uncertainty that builds resilience…. is KEY!

Time magazine did an article last month on the two faces of anxiety.
http://randomtidbitsofthought.wordpress.com/2011/12/13/why-anxiety-is-good-for-you/

The definition of Anxiety is .A state of uneasiness and apprehension, as about future uncertainties

The article talks about how Anxiety can be good for us… helping to sharpen our senses! Yes, I do agree with this…because again, this comes back to resilience. We can grow in resilience by productive anxiety, or too much to cope with, unproductive, we shut down.

If you have a child on the Autism spectrum , reflect for a moment why they are inflexible, controlling, passive, inattentive, anxious…. Consider their resilience (bank).

Consider what their therapy/Intervention is doing for their resilience? IS it making deposits in their resilience bank, giving them the tools they need where you see improvements with flexibility, etc ( without reinforcers)… or is it making your child MORE controlling, More anxious ( sure signs that something needs to change). Children on the spectrum are on anxiety medication at a record rate…and as one study suggests, behavioral therapies can help a child learn skills…but increase their anxiety. That is too high of a cost!

For my 2, addressing how they handled uncertainty by addressing developmental milestones…taking how they *feel* from unproductive to productive, began in them a chance to build up resilience. Especially for my older son who was around 8 at the time when we officially started RDI, going back to address this made the difference between an anxiety filled child, who was inflexible and controlling, to a 14 year old today who no longer has those core deficits of Autism, in our neighborhood school, has friends, etc.. Side note- In 1st grade my son controlling behaviors and anxiety were off the charts and there were times he would need to be restrained by his Aides.( heartbreaking!!)..and for 2nd grade he was shipped to a school for children with Autism!!

Autism robs a child of their emotional foundation- Dr Oz

2011-02-20T00:57:00.003-05:00

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!!!

For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays

2011-02-19T21:18:00.003-05:00

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.

The Dawn of thinking (ASD and Theory of mind)

2011-01-22T21:16:00.004-05:00

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

Good Morning America, well …maybe not so good!

2011-01-17T22:42:00.000-05:00

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

The Dance of Parent and Child

2010-11-08T00:53:00.003-05:00

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

The Cradle of Thought- Chapter One

2010-09-27T23:11:00.002-04:00

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.

The Principle of Perspective part two

2010-07-11T01:18:00.000-04:00

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

The Principle of Perspective Part One

2010-07-02T15:36:00.000-04:00

Thought, desire and feelings. How do they integrate? I never dreamed this would be something I would give a second thought too. My world changed after my son was Dx with Autism. Like many, I was told my children ( I have two with ASD) would never lead a normal life, and need to be placed in an institution, This was my first sense that convention wisdom when it came to Autism had a long way to go in understanding what Autism * is*. I also discovered that while mainstream medicine needed an update, there were many cutting edge developmental scientists and Doctors that were leading the way to greater understanding. I am finally at a point where I see that we are ALL trying to unravel Autism and how to effectively help children live a quality of life that they want!

This is what is leading me to concentrate the next month or so in reviewing the Book * The Cradle of thought* by Peter Hobson. I read this book a few years ago, and I found this book helped me to understand what I needed to focus on with my children, as this book is one of the dozen that Dr Steven Gutstein used to help all children on the spectrum through Relationship Development Intervention ® .

Fast forward a few years later, both my children are doing fabulous and they have effectively returned to their own developmental tracks in development. My youngest is not with his peers yet, but he will be…. And they both are able to share perspective and understand social cues ( theory of mind)

Back to thought, desire and feelings. These are the foundations to subjective perspective in infancy. In turn, this subjective perspective matures into taking on another’s perspective.

Taken from a book by Peter Walsh PhD- “No, and ways parents can say it”

A fascinating experiment helped map this change. A group of toddlers at fourteen months and then eighteen months were presented with raw broccoli and Goldfish crackers and then asked to share. As the author Malcolm Gladwell explained in a January 10, 2000 article in The NewYorker:

Some years ago, the Berkeley psychology professor Alison Gopnik and one of her students, Betty Repacholi, conducted an experiment with fourteen-month-old toddlers. Repacholi showed the babies two bowls of food, one filled with Gold¬fish crackers and one filled with raw broccoli. All the babies, naturally, preferred the crackers. Repacholi then tasted the two foods, saying "yuck" and making a disgusted face at one and saying "yum" and making a delighted face at the other. Then she pushed both bowls toward the babies, stretched out her hand, and said, "Could you give me some?"

When she liked the crackers, the babies gave her crack¬ers. No surprise there. But when Repacholi liked the broccoli and hated the crackers, the babies were presented with a diffi¬cult philosophical issue—that different people may have dif¬ferent, even conflicting, desires. The fourteen-month-olds couldn't grasp that. They thought that if they liked crackers everyone liked crackers, and so they gave Repacholi the crackers, despite her expressed preferences. Four months later, the babies had, by and large, figured this principle out, and when Repacholi made a face at the crackers they knew enough to give her the broccoli.

Toddlers are not doing things parents don't want them to do JUST to be contrary. They are exploring this newly discovered difference between themselves and others.

Now that we see when theory of mind starts to emerge….we can look at Autism, and that lack of emergence, and ask… What happened? What was the cause of how the brain was deprived from this typical growth of thinking?

We know genetics could play a role. We know that our environment and the toxins a child is exposed to could play a role. We also know that it could be a combination of both and that each child’s tipping point that lead to the brain deprivation in development is unique. We know that there is regressive Autism and Infantile Autism. We will be exploring all these possibilities, going over Peter Hobson’s “The cradle of thought” and talking about effective interventions and why they are effective. I hope that you find this series in my blog helpful.

Since I am not a medical Doctor, Dr. Bob Sears will join me in part two to discuss some Bio-medical information regarding Autism.

Kathy

Utube

2010-05-31T14:29:00.001-04:00

my utube channel-
ok now that one more thing is done I can finish working on my next blog which will be featuring a special guest :) Hoping to have it up within the next few days!

Kathy

New website and idea for post

2010-05-04T17:12:00.002-04:00

Hey Everyone! I finally made an official website click here . I will be working on that in the coming weeks. In addition to that, I am planning to start a series of posts based on the book by Peter Hobson "The cradle of thought". Hobson and his wife are involved in research studies for RDI and his book is foundational to why Dr G knew our kids could attain theory of mind.

I hope to start those in the next two weeks!

Kathy

Our children's future!

2010-03-09T09:45:00.001-05:00

Here is a recent study concerning outcomes for Quality of life for our young adults on the spectrum aging out of the educational system-

quality of life into adulthood

This is obviously not good news. That said, I do believe we have made strides in how we, as a society, view Autism and how we treat the deficits of Autism. While there are still treatments that focus on behaviors and getting a child to perform static skills, studies like these show that the long term benefits to teaching skills in hopes of generalization to thinking is very limited. We now know that children with Autism can obtain theory of mind in a developmental fashion just like their Neuro typical peers. Theory of mind/mindfulness however cannot be taught as a set of discreet skills to master. A child's developmental gaps must be remediated and the neurology of the brain will begin to repair itself. Developmental/Cognitive programs like RDI(R) Relationship Development Intervention, provides a child a do over in development. On page 15 of "The RDI Book" Dr Gutstein states that Dynamic Intelligence ( Theory of mind) and Neural integration have a circular relationship with one another. Dynamic Intelligence is a product of a neurally integrated brain. Neurally integrated brains development through dynamic problems that challenge the brains current neural architecture. The observable product of dynamic neural development us Dynamic intelligence."

Static vs Dynamic intelligence chart

Keeping in mind when we refer to IQ, we are looking at static skills. Someone with a 4.0 grade average from Princeton or YALE is not guaranteed a quality of life ( good job, marriage/relationships, etc) simply on their IQ. The determining factors take into consideration ones ability to have the mindfulness of all those dynamic functions mentioned on the chart. Life is not the sum of knowledge and IQ, but of experience and being able to share experience and perspective. This is NO different for a child on the spectrum. They may have some obstacles in their neurology for this to come naturally, but that is certainly no reason to concentrate on static abilities only with the thought that they are not needed, or that they *can't* do it.

When I look at my own children, of course I want them to do well with static skills. Those tend to come naturally for them...as I definitely can't memorize like my boys can! However, I know I needed to look further then *school* and sitting in a classroom learning skills. Beyond school is an entire world that does not play by the *rules* and is constantly changing. How would I prepare them for that? How can I make sure they don't fall into the statistics of functioning as a child with ASD, getting by, only to have the demands of adult life too much for them to handle. As the study shows, we need to do better! We can't sit by and hope that they will develop dynamic thinking by teaching our children static skills. We know that brain neurology does not work that way. The ability to solve problems, prioritize demands, have meaningful relationships and achieve long terms goals is acheived by the foundations of developmental neurology which are in place in a typical functioning child. We can have the same for the child with ASD as we go back to their * breaking point* in neurology and fill in those gaps. That is building a mind on a strong foundation. Our kids deserve that second chance!!

Level 5

2010-03-02T13:41:00.003-05:00

The fifth level of intersubjectivity is in regards to after 36 months in a typical child, and after stage 3 in the RDI objectives. This level represents My mind - past, present and future to Your mind ( child) past, present and future. Both minds are able to collaborate their experiences with one another. Included are the abilities of reminscing and reflection! This level is a level where of course there is always room for improvement. As adults we want to be able to balance our plans with a partners plans, and collaborate with one another instead of one person trying to control the entire interaction. Also included in this stage is being able to look at a situation that another is going through and put yourself into their perspective ( or to think of the different possible perspectives then just what meets the eye) Speaking of that, take a look here , here and here to take a comical look on what happens when we lack being able to apply the intersubjective relationship to a situation!

As far as what I see in my child with ASD, they both are able to share about the past experiences, the present and collaberate on the future. For a child, a good clue that they are could be in this stage is they are able to just come up to you, and say something like Mom, remember when * fill in the blank* and it is an experience or an interaction that you both can reflect and share on. One thing that could be a clue that a child with ASD may not have all the levels in place is that the conversation is very rote. The Parent is asking all the questions* how was your day, what did you do? etc* and the child is just responding. The parent is doing the work in the conversation to keep it going. Without that work, the conversation would fizzle pretty quickly.
RDI addresses the different elements of the intersubjective relationship in Guiding the child and working on those first foundational skills. This work ensures there are no gaps when these elements are remediated. An example of gaps would include having to prompt a child for the interaction. If a prompt is needed to have a child *look* at the parent, then that child is not developing the intersubjective element. Without gaze, a child cannot take on the caregivers perspective. You can see how, with RDI, getting to the root of the intersubjective relationship goes much deeper then just getting a child to be social or learning skills only. In RDI, we believe we must start at the beginning. Starting anywhere else is insufficient in order to progress through the natural developmental stages.

My goal as a Mom was to restore these developmental milestones for my children with ASD. As an RDI consultant my goal is to help other parents restore this relationship within their child .

Intersubjectivity - levels 3 and 4

2010-03-02T13:03:00.003-05:00

The third level of Intersubjectivity are for the ages from 15-24 months.
Inter is My actions/My intention and subjectivity is Your actions/your intentions ( child). This demonstrates the expectations of knowing the partners next actions without him or her telling you. Since my younger son on the spectrum is in stage 4 of RDI, he has this level of intersubjectivity mastered since this is a milestone for a 2 year old. An example of this includes one morning when I was cleaning up, I had a bunch of wrappers and papers in my hand to throw away. My son and daughter were dancing in the living room and a wrapper must of flown out of my hand back onto the floor. I glanced back with the intention on coming back to that once I threw everything away. What happened next was my son picked up the wrapper and ran to the kitchen ( I was heading back from the trash when we met up) he walked around me and threw the wrapper away. He then went back to his fun time with his sister. He was able to take my intention of throwing the items away, and without me saying a word, he picked up that I dropped the item and he was able to carry out my intention of throwing the item away. This was all without saying a word to him, which is very important when assessing if your child has this level mastered. I of course said, "thanks Jes!" I sort of chuckle with this level because I think that children at this age ( or children with ASD at this level) happily interact with you and feel very competent when they can help. This level gets alittle clouded once the teenage years come into play since then I am sure my teen would simply say ( well I figured you were coming back to get it)~grin~ So the thought is there :) There are many more examples of this level. I know for my Neurotypical daughter she would play and be able to know the next step in the interaction because of my previous intentions and actions.

Then we come to the fourth level. This level continues at ages 24-36 months. At this level, partners are balancing reference points. it goes from level three where the child knows intentions, to level four where the child trusts the parent and knows intentions, but is also developing that awareness of balance in blending the parents perspective within their own perspective. This level is the higher functioning of curiosity. They certainly dont call it the terrible twos for nothing! Sometimes I will hear that the terrible twos go well into the threes! :) It just depends on how long it takes for the child to balance that external and internal reference points to be able to blend perspectives. What this would look like is a child would take your perspective ( if you were to hand them an item and say *Yuck*) they would more then likely say yuck too...take on your perspective. Where you would see the development of this fourth level is if they then take another look at the item and want to also make their own conclusion. For example, the Child thinks...Mom says yuck, must be yuck. Wait, I don't know, let me look at it again. The child would then revisit the item to try and work out *their* feeling compared to Mom's feeling. Before this level, the neurotypical child ( and the child who is around stage 3 in RDI objectives), took your perspective pretty much without question.

intersubjectivity deficits within ASD

2010-02-26T00:25:00.005-05:00

The lack of development within the Intersubjective relationship for a child with ASD is one of the most documented deficits within the research of Autism. Developmental psychologists like Alan Sroufe, Alan Fogel, Barbara Rogoff, Peter Hobson, and Daniel Siegel, all have written books concerning this topic, along with joint attention, theory of mind, and Guided Participation. The research from these psychologists was the starting point when creating RDI. Peter Hobson, the author of "the Cradle of thought" is a Professor of Developmental Psychopathology at University College London and is currently involved in a study for RDI methods for the association between social and cognitive development across these areas in children with autism receiving treatment.
The following two links show research regarding the IR.

http://www.aifo.it/english/resources/online/apdrj/apdrj202/autism.pdf

The next research paper describes the deficits of children with ASD and is exactly the focus of the Relationship Development Intervention program.
http://www.uchsc.edu/psychiatry/research/Autism/Intersubjectivity_in_Young_Children_with_Autism.pdf

So along with theory I wanted to give you a few links from RDI moms incorporating this information into the lives of their children on the spectrum and families. Their discoveries this week as we continue this process of truly understanding the intersubjective relationship ( and how to remediate this deficit) is truly inspiring to me in addition to my own children and their progress!

Tammy tells us how a trip to the post office was very enlightening as she was able to people watch different levels of intersubjectivity in action.

Jennifer tells how she used some RDI strategies within the IR helped calm her daughter

JB lets us see the cutest little boy in action demonstrating some typical development within the IR. I also wanted to point out in this blog, Mom reminded us that Intersubjectivity is Not the same as a child simply looking, or even referencing.

Penny talks about when she first realized the concept of Theory of mind.

The breakdown of Guided Participation

2010-02-24T17:23:00.000-05:00

Guided Participation. What is it and why does RDI focus on the guided participation relationship as a means to restore a child back to their developmental track?

20 + years of research by experts in fields of mental health, development and environment coined the term Guided participation to represent how all societies use this method to guide their young. For a neuro-typical child, the parent immediately forms the connection and the child gives feedback according to that relationship. As early as 6 weeks, there is a role as guide for the parent and an apprentice for the child to learn from the actions of the parent. That baby is learning to be an active participant in their relationship with their caregiver. The parent does most of the work in the beginning and gradually by 1 years old, as the child is further developing theory of mind, both caregiver and child have an equal role and responsibility that consists of a natural flow of give and take feedback.
But what happens when there is a breaking point in that developmental milestone? What happens when a child cannot provide that meaningful feedback to the parent? Quoting page 129 from “the RDI book” from Dr Steven Gutstein- he says “Autism is not dx by the presence of any specific behavioral problems. What is distinctive is not the commission of specific things that the child does but rather the omission, when the child does not do, or is unaware of.”

For my own children on the spectrum, I clearly remember with each of them where I was not receiving that feedback. With my older son, of course knowing nothing about Autism, I did not recognize this until he was almost 3 years old. For my younger son, I knew there was a lack of feedback before he turned 1. Not knowing about relationship development intervention at this point, I desperately looked for ways to get him connected to me. This typically involved a lot of prompting and therapy to try and get my children to look at me, etc. What I tended to do with the lack of feedback, is do all the work in the interaction. Or I would just assume my child was not interested and this resulted in non therapy hours letting my child go off and stim or watch TV. I felt pretty incapable of successfully bringing my children into my world without me doing all the work.

10 years ago Autism awareness looked differently then it does today. This lack of feedback from my son, well, honestly, many people told me I was spoiling him, etc. This caused a lot of guilt for me…a lot of self doubt. I loved being with people but I was getting to the point where I did not want to be around people because as a parent of a child with Autism, I am sure you can relate to what others say who do not live in our shoes. And to that fact, I say that my children have taught me more then I could of ever taught them!
When I learned about RDI, I was floored when the programs description as I researched it explained to me about this breaking point in development. Someone was actually able to scientifically explain to me what I was *feeling* in my relationship with my children on the spectrum. I felt validated! That does not happen often when you are navigating through this journey. Since that point, RDI has proven time and time again to empower me in my jouney with my children.
So I thought I would empower you, the reader, Just in case you are having one of those days…that you need a pep talk! :)
There are different reasons for the neurological breakdown that results in Autism. There is regressive Autism and infantile Autism. I happen to have one of each… Lucky me ~grin~. Genetics can play a role, and triggers from the environment play a role. I believe that there is a genetic disposition and something in the environment triggers that vulnerability within the connections of the brain. One of my children benefits from some biomedical support because he also has gut issues that needed to be addressed to maximize his remediation. No matter what the origins, the end result is Autism. This tipping point, as Dr Gutstein Explains in his book, disrupts the child’s ability to develop the pre- requisites for the basic Guided Participation relationship that neurotypical children exhibit as they are able to continue on their path of development.
So what does this mean for us, as parents, who may feel incompetent when dealing with this breakdown. It means Autism is NOT our fault!!! Personally, for me, it set me up for a vicious cycle of compensation where I was doing all the work in my relationship with my child. I grew tired of the lack of feedback. I kept thinking I was doing something wrong! Think about in any social situation, when you are talking to someone and they are looking around. It is clear to you that their mind is elsewhere. They are not paying attention. They are not giving you the same feedback you are giving them. What do you do? For me, I either stopped interacting or yelled at them for not paying attention. :) When your own child does this to you, it digs down into your innermost *mommy* feelings of failure.
As a consultant, I address this with parents within one of the objectives within RDI. On page 131 of the RDI book, Gutstein reminds us, as parents that it is very difficult to compensate for the vulnerabilities with our children to get them to the point of remediation. He goes on to say that in his experience, the majority family members with an ASD child are among the most capable parents and grandparents, yet because of this breakdown, they struggle to carry over this expertise with their child with ASD.
For me, I felt like it was because I was told I had to teach my ASD child differently than a neurotypical child. I struggled with this for years until I found RDI. Restoring the natural process of development in my ASD child made sense to me…to follow the developmental path to fill in gaps of development in a more slow deliberate manner as a second chance for them.
Having the complete developmental curriculum at my fingertips in the operating system within RDI has empowered my family to know that my children will achieve a quality of life…all my children, ASD or Neurotypical. They are both back on their own developmental track.
Restoring our child’s developmental path is not impossible. You, as parents, have the capabilities to do this. Your child’s Autism, and their continued struggles, are not something that you did, or did not do. The breakdown OF the GPR is the cause. I salute each and every one of you as we go through this journey together!
So promise me that you will feel empowered when you look at your child. I am sure of their potential!

Intersubjectivity

2010-02-20T00:15:00.000-05:00

What is intersubjectivity?
I was pulling into Taco bell a few days ago for my son…he so desperately wanted a taco and I had a coupon, so there ya go! :) I slowed down, had my blinker on, but could not turn in because someone at that exact moment was walking in the driveway. It was only a moment that I had to wait for this person to cross, meanwhile the car behind me beeped at me. ….so I calmly said to my kids, now there is a good example of that person lacking intersubjectivity. My 6 year old said, Inter what? My teens just rolled their eyes.
So what is it…and why is RDI focused on restoring intersubjectivity through the process of Guided participation? Oh Guided participation is just a fancy way ( and the term that developmental scientists use to acknowledge how typical children learn- check out the book, Apprenticeship in thinking by Barbara Rogoff.) to say the process of a guide in a relationship, and we believe, in RDI, that children with Autism deserve a second chance at typical development through this guiding process. Therapies that are skill based work on teaching skills to children with little regard to what these kids are missing in the developmental track. They believe they can bypass development. What happens is the child will make progress that 1st year of skills, but those skills are instrumental in nature. Sure it is great that they can now sit still, and ask for juice...but the same progress can be made developmentally, while working on filling in the social and relationship gaps. That is not possible in a skill based program. What I have seen time in time again and even with my own children, is that then we have to go back and undo the uneven learning posed by skill training to get to the root of Autisms issues…understanding the *dance* of relationships.
Back to Intersubjectivity…the scene at taco bell. Ok, it is a bit of a dramatization…but at the same point I wanted a simple illustration. That person behind me, could not take my perspective. It was about HIM….not about US being on the road. He could not SEE why I took the action to stop instead of get out of his way. It was, at that moment, all about his needs. We obviously all have moments like these…so what I am referring to with lack of intersubjectivity with Autism is not as simplistic. We all have the foundations in place to be able to take on someone else perspective. Children with Autism do not.
The importance of understanding the Intersubjective relationship in regards to Autism is crucial. It is the basis for how we development mental engagement. Subjectivity is our appraisal, thoughts, feelings, memories, perceptions, etc of something, and Inter is that bridge between people. On this blog ( at an earlier post) I talked about the study showing that 18 month olds understand that others may not have the same feelings as they do about a subject. We already know that children with ASD struggle with relationships and perspectives. So where do we go back too?
There are five stages of the IR.
Children between the age of 3- 9 months have established primary intersubjectivity. They know that your actions and their actions go together. They take an action to your action. Think Peek a boo. The child is engaged with you and stays with you and the interaction. Both parent and child have a role in peek a boo…and a typical child will stay with his role.
Secondary Intersubjectivity is from 9-15 months. The child starts to be able to read reactions from not only how they feel but how you feel? They care about your reaction. I am reminded of a child who is learning to walk and falls….and looks at you for your Shared reaction….because that trust is there and they can accept your reaction to how they feel! If you react minimally and calmly, they typically will not cry. If you jump up and exclaim, Oh my are you ok?…They could share your perspective and start to cry. They are not hurt, but they are able to grab your reaction within the intersubjective relationship.

Typically with Autism either the primary or secondary IR has been affected. Because of Autism, the childs development has stalled in this area. RDI will go back to this stage in development and start to remediate the deficits that contributed to this not fully developing. Only then does the child have a strong foundation to continue on their developmental track. An example of how RDI works on Intersubjectivity at the 3-9 month old level ( since we certainly cannot play peekaboo with an older child) is through a process of co regulation. This co regulation can be fostered in any interaction that is done with the child. For example, simply by brushing your teeth with your child in a co regulated manner ( no commands, but slowly helping your child to focus on both you and he brushing teeth together), we can slowly help your child to understand that other people have a perspective, and a role in an interaction.

Stay tuned for the last three stages in the IR!
If you have any questions or comments, please post here or email me privately at k.darrow@verizon.net .

Theory of Mind

2010-02-12T13:56:00.000-05:00

Taken from the book- "No, and why parents need to say it"

Some years ago, the Berkeley psychology professor Alison Gopnik and one of her students, Betty Repacholi, conducted an experiment with fourteen-month-old toddlers. Repacholi showed the babies two bowls of food, one filled with Gold¬fish crackers and one filled with raw broccoli. All the babies, naturally, preferred the crackers. Repacholi then tasted the two foods, saying "yuck" and making a disgusted face at one and saying "yum" and making a delighted face at the other. Then she pushed both bowls toward the babies, stretched out her hand, and said, "Could you give me some?"
When she liked the crackers, the babies gave her crack¬ers. No surprise there. But when Repacholi liked the broccoli and hated the crackers, the babies were presented with a diffi¬cult philosophical issue—that different people may have dif¬ferent, even conflicting, desires. The fourteen-month-olds couldn't grasp that. They thought that if they liked crackers everyone liked crackers, and so they gave Repacholi the crackers, despite her expressed preferences. Four months later, the babies had, by and large, figured this principle out, and when Repacholi made a face at the crackers they knew enough to give her the broccoli

This above study shows a very important example of when a children developmentally understands some foundations of Theory of mind.

For our children with Autism, many have not been able to seperate that others feel differently then they do and put that into practice when they are interacting. RDI (R) addresses this in their program as it guides the parents and child through the developmental stages beginning exactly where your child left off on his developmental track.

What has been your experience with your child and this very important developmental milestone?

Welcome

2010-02-12T10:20:00.000-05:00

I have created this blog to talk about remediation and how remediation is possible with Autism spectrum disorders!!

The definition of remediation-
The act or process of correcting a deficient so that it no longer is an obstacle.

Autism is a cognitive developmental disorder. By correcting where the developmental path went astray in the brain, we can remediate the effects of Autism on that individual. This is done by a do over, giving the child or adult a second chance at development. The only program to date that does this in a step by step fashion ( breaking down each developmental step in typical children) is a program called RDI.
http://www.rdiconnect.com/

I am a Mom of 2 children on the spectrum, 2 neurotypical children, and I am an RDI (R) consultant in training.

I hope that you will find this blog helpful in your journey with Autism! My goal in becoming an RDI consultant is to help other family achieve the success that my own family has....and I am thrilled to be able to have that opportunity.

Here is my website!
http://mysite.verizon.net/vze3ww4z/

and Yahoo group
http://groups.yahoo.com/group/Autism-remediation-for-our-children/

Visit me on Facebook
http://www.facebook.com/home.php?ref=home#!/group.php?gid=84889719037&ref=ts
and
http://www.facebook.com/home.php?ref=home#!/pages/Mastering-Milestones-in-Autism/216175073875?ref=ts

I would love for you to post questions if you are new to RDI!!