Thursday, December 15, 2011

the two faces of anxiety

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 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.

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!!

Sunday, February 20, 2011

Autism robs a child of their emotional foundation- Dr Oz

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

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!!!

Saturday, February 19, 2011

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

A few days ago I read a thoughtful article here

). 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 ( ) must be recertified to show they are on top of the current research on developmental milestones for our children, and what is effective long term. This is the first line of defense for our children. After a RDI program under the direction of a certified consultant is in place in the home, the program can then branch out with mindful coaches as extenders for the family and in to the school if the child is school age. It may be necessary for a behaviorist to collaborate for short term compensation. But that is not always needed. RDI is clinically proven and is an evidence based emerging treatment. It is important to keep up with research on what Autism is to know how to effective help our children long term. Typical development is plan A. We need to stop doing plan B with children on the spectrum and restore their plan A! This reduces the need for always having to react to a new behavior and is a proactive approach.

5. Advocate for insurance reimbursement.

I believe in insurance reform to treat Autism as a developmental and medical condition, not a behavioral condition. I believe that treating the underlying foundational issues of Autism is far more cost effective then trying to alter their behavior from those unaddressed gaps in development. However, I believe in parental choice. If a parent chooses to use an intervention that addresses development compared to behaviors, they should have this choice. I believe it is empowering to help parents help their children. I believe that parents are the most effective therapists for their children. Since Autism is a developmental disorder, a bond of trust is crucial between parent and child. Because of Autism, this emotional trust is crucial and was thwarted because of Autism Once a regulation of this trust is strong, coaches to assist the parent can be brought in as necessary. This places parents as part of the professional team helping their children.

If you want private insurance to help, wait until the child pulls out everybody's hair and becomes a danger to himself or others. Then he can go to the ER while he waits for a bed at a an inpatient psychiatric facility. Obviously, I am not seriously advocating this course, as it is not humane -- or cost effective. Legislation in various states attempts to compel insurers to pay for autism therapies, but loopholes almost universally allow insurers to weasel out of reimbursing for ABA.

After I chuckled at this remark of course, I realized how sad it is that this is indeed what insurance does to us!!  Advocate for addressing the Antecedent of why the child feels incompetent in their social world in the first place.

6. Say NO to drugs as a first line approach.

Say this three times out loud: "No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan.

Although the AAP policy statement on the management of children with autism advocates for this approach, (published November 1, 2007; reaffirmed December 1, 2010) the AAP policy statement does not mention discipline strategies in any detail nor does it broach the subject of child maltreatment. It spends one paragraph on the importance of a behavior plan for an a child with "challenging behaviors," and then three and half pages on drugs, most of which are not well studied. There is a one page table that suggests specific classes of drugs for specific problems. Why isn't there a comparable table illustrating behavioral solutions or approaches to common problem behaviors? The policy statement assumes that you will be able to easily send the child to a specialist for a functional behavior analysis while you get ready to write the prescription.

Imagine if pediatricians or family practice physicians handled asthma this way. The child would arrive at the office coughing and dyspneic [short of breath]. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.

7. Help your patients' parents develop meaningful familial supports before crisis.

Of course an effective behavior plan requires not only an experienced professional for design but a motivated caretaker to implement. Personally, I can think of a handful of occasions when I would have benefited from a therapist in my home for intense short periods -- for example, when toilet training.

Here is one example: I write lots of prescriptions for diapers and incontinence undergarments for autistic children older than five, so that the parents can be compensated for the cost of these items. Many, if not most, children with autism can be toilet trained -- if their parents or caregivers have help from experienced professionals in this area. However, in my state, Medicaid pays for all the diapers you want but will not pay for any ABA or in-home behavior management.

This is where RDI again, looks at the why of the behavior and targets the missing milestones instead of just the behaviors. RDI targets behaviors too, which is why I agree with a behavior plans in context to the high goal of removing the obstacle through theory of mind. By addressing cognitive development, RDI addresses behaviors. Behavioral techniques that foster mindfulness are included within RDI.

8. Stop making parents the only "experts" on their child.

We do not diagnose a child with muscular dystrophy, brain cancer, or blindness, and then tell her parents that they are the real experts, but you will be available for consultation. We do not reassure parents of a child with these diagnoses that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. We should not use this approach for parents of children with an autism diagnosis.

How can we go from institutionalizing children with autism and blaming the disorder on their parents -- just 40 years ago -- to making parents the experts on autism treatments?

I like the idea of bridging this gap by "hospitalizing" the child and bringing the behaviorist/Coach to the house. I dream big. In the meantime, YouTube has great videos of families using RDI (sample search) or ABA (sample search). Autism Speaks now has its own channel.

It is sad that no physician has ever suggested to us -- fellow physicians -- that we could use resources such as online videos as a way for us to learn about therapies. Describing behavior therapies is like writing an essay about how to Salsa. Encourage families to find a way to observe it in action. Understanding each intervention and the purpose for that intervention helps parents make informed decisions!

9. Advocate for better training for folks on the front line.

Who are those on the front line? Social workers, early intervention educators, caseworkers from your state's developmental and /or cognitive service provider, special education teachers, and therapists -- those are the front-line folks you will meet. All need ongoing training -- in advances in remediation, and advances in what is known about education and behavior management for people with developmental delays. With social media and telemedicine there is no reason that individuals well-versed in behavior management cannot help children even in the most remote areas.

I know a marvelous occupational therapist who worked full time with autistic children. She cut back her hours because of fatigue. She wants so much to help train other people, but there is no way for her to make a living that way. Sometimes schools, counties, insurance companies, and large free standing children's hospitals do not want to pay for consultation with a behavior specialist, or allow their employees to take time away from client duties to get better trained. In the big picture, it would not only save money it would save lives.

10. Stop corporal punishment in schools and in homes.

Human Rights Watch reported that children with disabilities including those with autism were more likely to endure corporal punishment in schools than their typical peers. Nobody would ever know if I hit my son on a regular basis. Although he is verbal, he would never be able to articulate abuse to anyone. There are limited studies on what parents do in the home for discipline. Most parents understand that their children are fragile and different. However, they lead incredibly stressful lives with very limited respite options. They need techniques to combat aggressive behavior effectively and safely.

Saturday, January 22, 2011

The Dawn of thinking (ASD and Theory of mind)

Chapter 3 The Cradle of thought

What can RDI do for your Family/Child?

In reading chapter 3, a question was in the forefront. Ok, so we know that children on the spectrum lack Theory of mind. From my 11 years of experience with Autism, both as a parent and a professional, this is undisputed. But before I continue with the question of what RDI does for the child on the spectrum, we need to think about what our own determination of theory of mind is. Do we believe that our children on the spectrum can have that intersubjectivity within their relationships? Do we think this knowledge is crucial when determining what intervention best fits our beliefs? In exploring this belief we determine the direction in which you choose to help your child with Autism. Questions like, how does this help my child with perspective, or how will my child understand inferences compared to black and white thinking?

I wanted to mention here, the complexity of the lack of *sharing another’s state of mind* is evident in both infantile Autism and regressive Autism. This is a core deficit of both forms with different triggers. In many children on the spectrum, regardless of either Diagnoses, a co occurring condition of sensory integration, or inflammation of the gastrointestinal track must also be simultaneously addressed alongside theory of mind. Bio medical treatment and/or brain integration help heal the assault on the brain, but the core deficits must always be addressed in addition to getting the child’s immune system working properly.

This Chapter, and woven throughout the remaining chapters of the book, explains what RDI can do for a child on the spectrum…through the lens of intersubjectivity which leads to theory of mind.

Looking at the *dawn* of thinking...and the definition of primary intersubjectivity .

Primary- Actions and emotional state of a baby up to 9 months old

Inter- Something happening between two people

Subjectivity- Your unique appraisal, thoughts, perceptions, feelings memories and dreams

For a baby about 3-9 months of age, Intersubjectivity is about *us* Think of the games we play with them , peekaboo, etc. Very Simple actions that are centered around both people involved. On the foundational level, 9 month old’s are able to accept the initiation of peekaboo, manage their attention, respond to both attention and lack of attention. These actions are referred to as being able to emotionally regulate with the other person.

In the coming chapters of The Cradle of thought, we will go through all the stages of intersubjectivity. Since the foundational milestones in RDI are based in the ability to share with another’s mind ( being conscience of another’s conscienceness), most children who start RDI start here regardless of the therapies they may have received in the past. This is where families learn about the Guide Apprentice role that we intuitively do with typical children ( we are their guide, and they are our Apprentice to the world as we teach them). With the Diagnoses of Autism, we fall into the role of following them around and reversing what is done with typical children. I should mention here to reach into a child’s world with Autism, we do not have to give up the role of Guide. As we guide our children to regulate with our actions and roles, this forms the ability for joint attention which is crucial to a child as young as 3 months. Think of Peek A boo…without the child being able to share joint attention with the Mother/Father, you can visualize how that would affect the emotional connection. This primary stage is huge as these functions in development lay the groundwork for all future understanding of how we, in our relationships, depend on collaboration and shared perceptions .

Secondary Inter Subjectivity begins from 9 months - 15 months….which I will save for Chapter four “The Cast of thought”.

So let’s take a look at the very basic primary stage that a typical 9 month old has mastered . A few of the mastered milestones of this stage is –

Managing attention

Acceptance of initiation/invitation

Response to initiation failures

Response to initiation successes

Coordination of emotional tone (happy, sad, etc)

Coordination of emotional intensity (a little excited or very excited)

Balance of communication (verbal, non-verbal, etc)

As you look at the mastered milestones, you’ll notice that these milestones are very necessary to have meaningful reciprocal relationships. It is incredible to me that a 7 month old has the foundational skills to begin to understand friendships and meaningful relationships because of their emerging theory of mind, knowing that social interaction are about *us*, Their thoughts begin to move out of instrumental * me* and into the next stage where they want to share experiences.

What I have found as both a parent of 4, 2 diagnosed on the spectrum, who had to help both move out of instrumental mode along with professionally seeing many children who were trained for many skills but their theory of mind was never addressed…is You cannot skip this crucial stage without consequences. Over and over social skills groups try to address the lack of social understanding with our children, and while their attempts are well meaning, their methodology is just another rote way to try and build upon a weak foundation because basic milestones have never been met. A parent will say to me, if only my child could get a friend!! Or they will let me know their biggest challenge is initiating friendships with their peers. Now look back at those primary milestones…This is where the function of learning about friendship begins.

Another common thread that I hear with parents is regression . Again, our children are just like any other child, and they need these basic milestones in place to have a strong 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.


Monday, January 17, 2011

Good Morning America, well …maybe not so good!

As I gave out a heavy sigh upon watching Good Morning America today, I decided to interrupt my regularly scheduled Blog ( I will post Chapter 3 on Wednesday!) because of George’s incredible rudeness on national television. I mean I get that he does now agree with Andrew Wakefield ( or he was told not to agree, whichever the case may be)…but I felt like I needed to give him a scolding for being so rude ( after all I do teach my children it is rude to continuously interrupt someone when they are soeaking)
So here are some of my musings of the current events these past few weeks!! Last week was Anderson Cooper, this week, Good Morning America ( and its only Monday!). Of course in between were countless interviews with Doctors, parents, reporters, etc…on both sides of the issue. And that issue is- Do Vaccines cause Autism?
Andrew Wakefield could not have been clearer, along with most people who spoke on the subject from both sides of the issue. The answer is, we don’t know. Even Doctors who claim that there is no connection admit the problem is, we simply don’t know what causes Autism! To me, well, if we don’t know, we cannot rule out anything without intense, non biased studies ( the studies where people are truly looking for the answer and not trying to disprove the other side) Intent is a huge factor within research and can have a huge impact on what is*FOUND* in research! We need studies that are not funded by the interest of the stakeholder!
Controversy always gets me thinking…and I tend to go back to History. I know that one of the quotes in the RDI book is from William James- “First, you know a theory is attacked; then it is admitted to be true, but obvious and insignificant; Finally it is seen to be so important that its adversaries claim that they themselves discovered it”
My own children who were diagnosed with Autism are now just about 14 and 10. I have been around long enough to see the tides turn within all kinds of opinions.
So since this is my blog, I wanted to share some of how I got to where I tend to take my mind when people are talking about something *new* something out of mainstream, and/or something controversial. I will try and keep this as short as possible, so if I miss something it is not because I did not want to talk about it.   I am also in the unique position because I have two children diagnosed on the spectrum, One who was Diagnosed with Regressive Autism, and the other with Infantile Autism. Yes, there is a difference. And I also have two Neuro typical children. This is important because Autism is not triggered by one isolated incident but rather a perfect storm of genetics and/or environmental triggers. I am no doctor but I would think that being able to assess a child’s immune system, along with family history of allergies, etc could go an incredibly long way in making progress with pinpointing how to head off that trigger for each child who would be susceptible to regressive Autism. At the least it would be much more productive then trying to dismiss that Autism and Gastro immune issues co- exist in 70 percent of children with Autism as irrelevant. Remember the quote in the beginning of the blog. Keep in mind that there are doctors on both sides of the issues. A look at history tells us that Mainstream medicine focuses on understanding problems from the perspective of the stakeholders involved and then applying information and other technologies as needed. This serves us well in some cases, and in other cases it is a hindrance to, well…truth. It does this because the stakeholders have A LOT to lose
Since we are talking about Autism, I am going to use the my experience with two interventions the same way I look at what is currently in the news with Andrew Wakefield. I do this because as a parent, I needed to be doing something for my kids. Don’t get me wrong, effective research is vital in understanding Autism, but equally important is understanding effective long term treatment for our kids. After all, they are all going to grow up to be adults so this effects our entire society, not just those of us who have children on the spectrum.
Starting with Behaviorism we know that Dr Lovaas started his work in the early 1960’s. In 1965 there was a published article in LIFE regarding his * new treatment*

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!!;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??