Chapter four The Cast of thought
What is our emotional foundation? Or more importantly, if Autism robs our children of this foundation, how do we *get it back*? To answer that question, we need to look at how our emotions emerge in the first place! How do we *think* about thinking?
We know our capacity to think and feel with our own perspective is a human trait. It is something I, as a parent took for granted before Autism came into my life.
This chapter goes into the process of having thoughts…and then perceiving that we are having thoughts. We obviously all have thoughts, and as we are thinking, we know other people who we are interacting with are also thinking. We know that they may be thinking different things then we are, but at the same time we can carry on a nice back and forth conversation or action because we are able to adjust to perspectives. For children on the spectrum, they think, but on in a very rigid manner. Their thinking can be black and white and since it can be hard to understand that other people have thoughts too, it appears that in every interaction, it is all about them or how something affects them.
For an example of this, I was reminded this week of the show Dragnet. If I admit I remember the show I admit my age so I what I will say is I think I was too young to watch it. :) But I remember people talking about it. Anyway, Sergeant Joe Friday would go into a situation and try and get information, and usually was encountered with * emotion*. He ended up having to shift through all the perspective and emotions to get * just the facts*. Of course this is necessary at times, but what if the brain was wired in such a way where it always asked *just the facts”? The world was seen as objective, just knowledge and facts.
The fact is, this would mean the neurology of that person had gaps in their early developmental milestones that prevented their emotional and social foundation from emerging. These gaps, then cause the domino effect of skills being build without the understanding of the social or emotional function of the skill. Knowing that you can think, in comparison to being able to perceive your thoughts and perspetives is at the heart of Chapter 4.
When our brains are comfortable and relaxed, we tend to be able to entertain thoughts, contemplate, or ponder much easier and be subjective in our thinking. We have opinions, feelings, emotions that are all built on what we have perceived.
We move from thought to though, we daydream, we come *back to reality* . WE can take an object, think about it, its color, its size, what we want to use it for. We can take up different perspectives to the very idea of having a thought about something- page 96
How does, and when does *this* start?
On page 99 Hobson talks about Symbolism. Symbolism enables us to think about Absent realities. As I continued to read, he used the example of a painting and what we *see* when we look at it. How do we interpret what the picture or painting is saying. If it is a picture of a memory, we look at the picture and reflect on that time, we ponder and entertain our emotions during that picture. We don’t simply look at the picture and think, Im wearing a blue shirt, there is a dog in the background, etc etc. The picture represents a symbol of our perspective.
One of the assessments within RDI, is reviewing meaningful pictures with a child. It is common for children with Autism to view pictures or paintings as something to label. By keeping track of this process, we can see the progression from the start where the child views pictures as items to label,.. to a representation of their own perspective as the child’s developmental gaps are filled in to what they were doing in the picture and their own perspective..
On poge 103, Hobson asks the question-How does the infant escape her sole view of the world to gain a vantage point from which she can survey the scene from a number of perspectives? I was a little surprised to read that object permanence was the next factor in this ability.
The reason this was fascinating to me is because in my experience with Autism, both as a parent and as a professional, one of the diagnostic criteria in the DSM for Autism is *plays with toys inappropriately.* so right there, we see that the part of the brain that fosters object permanence is affected.
“Object permanence is the understanding that objects continue to exist even when they cannot be seen, heard, or touched. It is acquired by human infants between 8 and 12 months of age via the process of logical induction to help them develop secondary schemes in their sensori-motor coordination. This step is the essential foundation of the memory and the memorization process.”
Alongside Object permanence and logic, an infant begins to see their world through the eyes of their parent, through borrowing their parents perspective. We see this with a child who checks back with an adult for safety before doing something they are unsure of. We also see this if a child falls or is startled in any way, and looks at his caregiver for their perspective before they react. Sometimes we as parents can hijack those tears if we smile and say Youre ok, compared to giving them a startled face in return and rushing towards them saying oh no are you ok? Alright I’ve done both, I’ll admit it! :) That is a great example of our babies learning about perspective by borrowing OUR perspective first! Great stuff in this chapter!
AN example of logic and perspective borrowing hand in hand is imitation. When you play on the phone and pretend to talk and a baby does imitates, or when a young child plays dolls…children even as they get older process their world through the perspective of their trusted parent The infant is learning about the toy but at the same time that toy is telling them alittle about their mom.
This is how perspective emerges, by the infant gaining a vantage point from which she can survey the scene from a number of perspectives. Page 103
In contrast, a child with Autism has had that neurological path effected in a way that they did not gain ( Or they lost something they once had) the foundational ability to see the world through another’s eyes, and have started down the path to see the world first through their own eyes. This information is crucial in knowing how we can restore development and perspective for our kids! We know that children on the spectrum want to keep their world *their* way, their perspective and easily fall apart when we reach into their world with our perspective. We know this is an important milestone that cannot be skipped when going back and giving our children a chance for a do over in their development.
While I can’t cover everything in this chapter, I wanted to end with talking about the role of language in the progression of perspective.
On Page 111…simularities between language and play words are used for communication in play and perspective. Learning language communicates social understanding. Once a child starts to *talk* they are typically excellent communicators socially and emotionally. They have already began the process of object permanence , symbolism, and borrowing perspectives. They are well on their way of understanding that they have their own perspective while another can have a differing perspective. I blogged about it here http://autismremediationforourchildren.blogspot.com/2010/07/principle-of-perspective-part-one.htm
Without these foundations in place or restored is lost, learning language becomes a static skill. This is evidenced by its purely instrumental use for labeling, needs , wants or scripting and not for emotional sharing or perspective. This is also the reason grammar is confused. To give an example, children will repeat the sentence said to them in order to respond. If you ask a child “ Do you want a drink of water” and when they are thirsty again and say to you “ do you want a drink of water” as their means to ask, they are missing the milestones and perspective taking necessary to determine how to change that sentence to express your perspective to their perspective. My own child years ago would continue to say Say when we were asking him to say Water, He did not understand that he was able to drop the “say” These are all indicators that a child does not use language correctly in relation to perspective communication. They do not yet have the skill to switch viewpoints in seeing the world through someone else’s eyes first, and then their own. One of a pet peeve of mine is Autism interventions who work on teaching language without these prerequisites in place. It is a pet peeve of mine because I myself did this to my one child on the spectrum. Once I learned about his developmental milestones needing to be addressed, I had to go back and undo how he learned language ( his chatter about nothing in particular or obsessing over a topic), and work on perspective within communication. By doing this, he now has the tools for meaningful friendships that are only possible with someone who is able to understand that both parties are *thinking and have a perspective” in an activity. For my second child on the spectrum I had learned how to effectively encourage communication within development. He never had any pronoun issues or lack of experience sharing communication.
A mom in the audience of the Dr Oz show said her son had a 4.0 average academically but cannot make a friend. The ability to make a friend starts in infancy…before language or before learning skills, It is rooted in our children’s emotional foundation.
This chapter reminded me why it is extremely important to understand the effect of addressing developmental milestones ( and what happens when we do not) in our children. Our kids, any child, dx or not, have enough to struggle through understanding childhood... removing certain obstacles to give them a better understanding of the social world is a huge advantage to this wonderful children!!
We won't sit still and let Autism continue to rob our children of the ease of their social and emotional abilities! We are taking back our children and removing as many obstacles for them as we can!!!
Sunday, February 20, 2011
Saturday, February 19, 2011
For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays
A few days ago I read a thoughtful article here
http://thinkingautismguide.blogspot.com/2011/02/for-physicians-10-things-you-can-do-to.html?m=1
). I like that Dr Som spoke up to bridge the topic, even though I don’t necessarily agree with everything said. The things I do agree with I kept. And are noted in a pretty blue as to give credit :)…. No sense recreating the wheel !! :) My comments are in black italic. Anyway, I wanted to do my own version, maybe to give to my pediatrician, not because I don’t like my pediatrician cause I do. I find him very open minded, easy to talk too, and he is not hard to look at either( you know… easy on the eyes ladies!)!! That said, as a mom of two children Dx on the spectrum and a professional in the field, I definitely have something to say on this topic…some of my thoughts applaud what Dr Som says, but some don’t. That’s ok because we as parents always need options to make informed decisions for our own children!! I know I did. I needed options for every step of the journey I made with my two children. They were both very different yet shared those core issues of Autism. So we, as parents don’t always agree, except when it comes to being able to make an informed decision for our own children and family! In the spirit of that, here is my addendum to-
For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays
The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices:
1. Understand the ABCs of behavior
• A= Antecedent = What happened immediately before the behavior?
• B= Behavior = A description of the behavior (not "he got angry")
• C= Consequences = How did the parent or teacher respond.
According to the American Academy of Pediatrics (AAP) policy statement on discipline, parents are more likely to use aversive techniques like spanking when they are angry or irritable, depressed, fatigued, or stressed.Although I cannot speak for all the caregivers of developmentally delayed children, one of these adjectives describes me all the time. The policy statement also mentions that spanking can be a positive reinforcer for children much like my firm "stop it" or sighing were for David. The policy does not address developmentally delayed or autistic children. The AAP policy statement on the maltreatment of children with disabilities discusses the issue, but I hope most pediatricians address behavior management techniques before there is concern about maltreatment.
Ok lets face it, you know as our doctor/working with our child on the spectrum, Autism shakes us to our core!
Understanding behaviors are indeed crucial to understanding what is going on with our children. But it is not all about shaping their behaviors…we as parents want to shape our children’s minds! Not just shape their minds to behave a certain way, but to truly think with the ability of reciprocal perpective taking in their decisions. We do appreciate some techniques from Behavioral modification, as they are shown effective in various degrees with addictions for adults or for our kids just trying to get them to brush their teeth with a sticker chart, etc. They show effectiveness with some children with Autism by teaching them a skill. I knew Behavioral modification before I knew Autism. With my first child, I thought I understood how ABA would help him. It did help him, according to most of you. But for me, he knew skills, and could talk for his needs, but socially and mindfully there were huge gaps!! But I was told how great he looked. He was recovered because he got A’s on his report card. Or because he could simply talk. Yet, He did not understand friendship because he could not take on another person’s perspective. I learned a valuable lesson that day for my younger son who was also Diagnosed with Autism…and for my older son to know how to still help him and not give up thinking it was as good as it gets. I stopped looking at Autism as a behavioral issue and started looking at our children as we would any typical child? Yes that’s right, pull out the what to expect the first year-5 years books and apply that information to our children too!! Can we give them a chance for a do over in their development that they missed the first time because of the assault on their neurology? As a Mom, I wanted that for my own children!! Not to change who he or she is, but to remove those obstacles because of those basic missed milestones that is at the core of our kids emotional foundation. Believe it can happen with me and don’t just try and get our kids to act a certain way. We want them to know why and feel competent in their social world! We want that to be the first line of defense so that we build upon a strong foundation so that they can resume on their developmental pathway!
We know our kids are missing vital developmental milestones so throwing them behavioral techniques are short term compensations that do little to help them develop theory of mind. That is why over and over again I hear “he does great academically but he can’t make a friend” The reason for this is because they do not have the foundational social and perspective skills that emerge in typical children as early as 6 months old. Think of the crisis of children entering adulthood on the spectrum. They can read, they can write, they can talk, but they do not have theory of mind for perspective, for intersubjectivity. What I’m proclaiming from the rooftop is, we now know so much more then we knew before concerning Autism. We want our children to think *on their feet*, to be mindful, and those actions, is where theory of mind emerge. And yes, it is possible! Raise the bar with me. RDI follows the traditional guide apprentice role comparable to how we interact with our typical children. We do not reinforce poor behavior either but at the same time reinforce that both child and mom are both going through a thought process during any interaction. With my 2nd child Diagnosed on the spectrum, after a short time of ABA in which we were making no progress, switching to RDI not only took care of his cognitive development, his ability to attain theory of mind, but also any behaviors that he was presenting. Sometimes Behavioral Modification is necessary for short term compensations, and has its place… but stop acting like it will give our children theory of mind!
2. ASK and LISTEN.
Many families assume that routine check ups for a child with autism are for vaccinations and other non-mental or behavioral health issues. Many families have seen or are actively seeing a developmental pediatrician or psychiatrist. Ask if these professionals are accessible and helpful when it comes to the very practical issue of daily discipline. If concerns are not being addressed, send your patients elsewhere. Sometimes just talking helps families find focus and prioritize what they juggle everyday. Most of all understand that some parents will now have trust issues with you. After all, you may have been the same doctor who told them their child may need to be institutionalized or the educator that says that they don’t expect much from our child. Please recognize parents as an effective team member who has more vested in this issue, their child. They spent sleepless nights reading, on the internet, etc. Listen to what they have to say.
3. Know where to send your patients.
Do you know the specific schools or programs in your community that excel for children with cerebral palsy, developmental delays, or autism? Which therapies do you suggest and for what reason?
Not all therapists are equally skilled, which is especially true if the child is seeing a therapist via a state early intervention program. If you reflexively send special-needs patients to the triad of occupational therapy (OT), physical therapy (PT) and Speech Language therapy (SLP), without determining a child's unique needs, the family's insurance, and what your patient's Special Education Local Area Plan (SELPA) offers, you are not providing a true medical home.
One thing you can do is to enlist the help of parents of special-needs children in your practice. Ask if they would mind if a parent in need contacted them. We wish desperately that a primary care doctor or specialist had done that for us, especially when we first relocated.
This is important because it is easy to fall into the trap of thinking something is effective, but to talk to parents who has been down that road, and then see the outcome, is huge in bridging the gap from what is thought to be effective, to what is truly effective in the long term.
4. Send your patients to a Certified Relationship Development Intervention Consultant who has completed their training with RDI. Also note that each year, these same consultant ( http://www.rdiconnect.com/pages/Find-a-Consultant.aspx ) must be recertified to show they are on top of the current research on developmental milestones for our children, and what is effective long term. This is the first line of defense for our children. After a RDI program under the direction of a certified consultant is in place in the home, the program can then branch out with mindful coaches as extenders for the family and in to the school if the child is school age. It may be necessary for a behaviorist to collaborate for short term compensation. But that is not always needed. RDI is clinically proven and is an evidence based emerging treatment. It is important to keep up with research on what Autism is to know how to effective help our children long term. Typical development is plan A. We need to stop doing plan B with children on the spectrum and restore their plan A! This reduces the need for always having to react to a new behavior and is a proactive approach.
5. Advocate for insurance reimbursement.
I believe in insurance reform to treat Autism as a developmental and medical condition, not a behavioral condition. I believe that treating the underlying foundational issues of Autism is far more cost effective then trying to alter their behavior from those unaddressed gaps in development. However, I believe in parental choice. If a parent chooses to use an intervention that addresses development compared to behaviors, they should have this choice. I believe it is empowering to help parents help their children. I believe that parents are the most effective therapists for their children. Since Autism is a developmental disorder, a bond of trust is crucial between parent and child. Because of Autism, this emotional trust is crucial and was thwarted because of Autism Once a regulation of this trust is strong, coaches to assist the parent can be brought in as necessary. This places parents as part of the professional team helping their children.
If you want private insurance to help, wait until the child pulls out everybody's hair and becomes a danger to himself or others. Then he can go to the ER while he waits for a bed at a an inpatient psychiatric facility. Obviously, I am not seriously advocating this course, as it is not humane -- or cost effective. Legislation in various states attempts to compel insurers to pay for autism therapies, but loopholes almost universally allow insurers to weasel out of reimbursing for ABA.
After I chuckled at this remark of course, I realized how sad it is that this is indeed what insurance does to us!! Advocate for addressing the Antecedent of why the child feels incompetent in their social world in the first place.
6. Say NO to drugs as a first line approach.
Say this three times out loud: "No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan.
Although the AAP policy statement on the management of children with autism advocates for this approach, (published November 1, 2007; reaffirmed December 1, 2010) the AAP policy statement does not mention discipline strategies in any detail nor does it broach the subject of child maltreatment. It spends one paragraph on the importance of a behavior plan for an a child with "challenging behaviors," and then three and half pages on drugs, most of which are not well studied. There is a one page table that suggests specific classes of drugs for specific problems. Why isn't there a comparable table illustrating behavioral solutions or approaches to common problem behaviors? The policy statement assumes that you will be able to easily send the child to a specialist for a functional behavior analysis while you get ready to write the prescription.
Imagine if pediatricians or family practice physicians handled asthma this way. The child would arrive at the office coughing and dyspneic [short of breath]. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.
7. Help your patients' parents develop meaningful familial supports before crisis.
Of course an effective behavior plan requires not only an experienced professional for design but a motivated caretaker to implement. Personally, I can think of a handful of occasions when I would have benefited from a therapist in my home for intense short periods -- for example, when toilet training.
Here is one example: I write lots of prescriptions for diapers and incontinence undergarments for autistic children older than five, so that the parents can be compensated for the cost of these items. Many, if not most, children with autism can be toilet trained -- if their parents or caregivers have help from experienced professionals in this area. However, in my state, Medicaid pays for all the diapers you want but will not pay for any ABA or in-home behavior management.
This is where RDI again, looks at the why of the behavior and targets the missing milestones instead of just the behaviors. RDI targets behaviors too, which is why I agree with a behavior plans in context to the high goal of removing the obstacle through theory of mind. By addressing cognitive development, RDI addresses behaviors. Behavioral techniques that foster mindfulness are included within RDI.
8. Stop making parents the only "experts" on their child.
We do not diagnose a child with muscular dystrophy, brain cancer, or blindness, and then tell her parents that they are the real experts, but you will be available for consultation. We do not reassure parents of a child with these diagnoses that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. We should not use this approach for parents of children with an autism diagnosis.
How can we go from institutionalizing children with autism and blaming the disorder on their parents -- just 40 years ago -- to making parents the experts on autism treatments?
I like the idea of bridging this gap by "hospitalizing" the child and bringing the behaviorist/Coach to the house. I dream big. In the meantime, YouTube has great videos of families using RDI (sample search) or ABA (sample search). Autism Speaks now has its own channel.
It is sad that no physician has ever suggested to us -- fellow physicians -- that we could use resources such as online videos as a way for us to learn about therapies. Describing behavior therapies is like writing an essay about how to Salsa. Encourage families to find a way to observe it in action. Understanding each intervention and the purpose for that intervention helps parents make informed decisions!
9. Advocate for better training for folks on the front line.
Who are those on the front line? Social workers, early intervention educators, caseworkers from your state's developmental and /or cognitive service provider, special education teachers, and therapists -- those are the front-line folks you will meet. All need ongoing training -- in advances in remediation, and advances in what is known about education and behavior management for people with developmental delays. With social media and telemedicine there is no reason that individuals well-versed in behavior management cannot help children even in the most remote areas.
I know a marvelous occupational therapist who worked full time with autistic children. She cut back her hours because of fatigue. She wants so much to help train other people, but there is no way for her to make a living that way. Sometimes schools, counties, insurance companies, and large free standing children's hospitals do not want to pay for consultation with a behavior specialist, or allow their employees to take time away from client duties to get better trained. In the big picture, it would not only save money it would save lives.
10. Stop corporal punishment in schools and in homes.
Human Rights Watch reported that children with disabilities including those with autism were more likely to endure corporal punishment in schools than their typical peers. Nobody would ever know if I hit my son on a regular basis. Although he is verbal, he would never be able to articulate abuse to anyone. There are limited studies on what parents do in the home for discipline. Most parents understand that their children are fragile and different. However, they lead incredibly stressful lives with very limited respite options. They need techniques to combat aggressive behavior effectively and safely.
http://thinkingautismguide.blogspot.com/2011/02/for-physicians-10-things-you-can-do-to.html?m=1
). I like that Dr Som spoke up to bridge the topic, even though I don’t necessarily agree with everything said. The things I do agree with I kept. And are noted in a pretty blue as to give credit :)…. No sense recreating the wheel !! :) My comments are in black italic. Anyway, I wanted to do my own version, maybe to give to my pediatrician, not because I don’t like my pediatrician cause I do. I find him very open minded, easy to talk too, and he is not hard to look at either( you know… easy on the eyes ladies!)!! That said, as a mom of two children Dx on the spectrum and a professional in the field, I definitely have something to say on this topic…some of my thoughts applaud what Dr Som says, but some don’t. That’s ok because we as parents always need options to make informed decisions for our own children!! I know I did. I needed options for every step of the journey I made with my two children. They were both very different yet shared those core issues of Autism. So we, as parents don’t always agree, except when it comes to being able to make an informed decision for our own children and family! In the spirit of that, here is my addendum to-
For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays
The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices:
1. Understand the ABCs of behavior
• A= Antecedent = What happened immediately before the behavior?
• B= Behavior = A description of the behavior (not "he got angry")
• C= Consequences = How did the parent or teacher respond.
According to the American Academy of Pediatrics (AAP) policy statement on discipline, parents are more likely to use aversive techniques like spanking when they are angry or irritable, depressed, fatigued, or stressed.Although I cannot speak for all the caregivers of developmentally delayed children, one of these adjectives describes me all the time. The policy statement also mentions that spanking can be a positive reinforcer for children much like my firm "stop it" or sighing were for David. The policy does not address developmentally delayed or autistic children. The AAP policy statement on the maltreatment of children with disabilities discusses the issue, but I hope most pediatricians address behavior management techniques before there is concern about maltreatment.
Ok lets face it, you know as our doctor/working with our child on the spectrum, Autism shakes us to our core!
Understanding behaviors are indeed crucial to understanding what is going on with our children. But it is not all about shaping their behaviors…we as parents want to shape our children’s minds! Not just shape their minds to behave a certain way, but to truly think with the ability of reciprocal perpective taking in their decisions. We do appreciate some techniques from Behavioral modification, as they are shown effective in various degrees with addictions for adults or for our kids just trying to get them to brush their teeth with a sticker chart, etc. They show effectiveness with some children with Autism by teaching them a skill. I knew Behavioral modification before I knew Autism. With my first child, I thought I understood how ABA would help him. It did help him, according to most of you. But for me, he knew skills, and could talk for his needs, but socially and mindfully there were huge gaps!! But I was told how great he looked. He was recovered because he got A’s on his report card. Or because he could simply talk. Yet, He did not understand friendship because he could not take on another person’s perspective. I learned a valuable lesson that day for my younger son who was also Diagnosed with Autism…and for my older son to know how to still help him and not give up thinking it was as good as it gets. I stopped looking at Autism as a behavioral issue and started looking at our children as we would any typical child? Yes that’s right, pull out the what to expect the first year-5 years books and apply that information to our children too!! Can we give them a chance for a do over in their development that they missed the first time because of the assault on their neurology? As a Mom, I wanted that for my own children!! Not to change who he or she is, but to remove those obstacles because of those basic missed milestones that is at the core of our kids emotional foundation. Believe it can happen with me and don’t just try and get our kids to act a certain way. We want them to know why and feel competent in their social world! We want that to be the first line of defense so that we build upon a strong foundation so that they can resume on their developmental pathway!
We know our kids are missing vital developmental milestones so throwing them behavioral techniques are short term compensations that do little to help them develop theory of mind. That is why over and over again I hear “he does great academically but he can’t make a friend” The reason for this is because they do not have the foundational social and perspective skills that emerge in typical children as early as 6 months old. Think of the crisis of children entering adulthood on the spectrum. They can read, they can write, they can talk, but they do not have theory of mind for perspective, for intersubjectivity. What I’m proclaiming from the rooftop is, we now know so much more then we knew before concerning Autism. We want our children to think *on their feet*, to be mindful, and those actions, is where theory of mind emerge. And yes, it is possible! Raise the bar with me. RDI follows the traditional guide apprentice role comparable to how we interact with our typical children. We do not reinforce poor behavior either but at the same time reinforce that both child and mom are both going through a thought process during any interaction. With my 2nd child Diagnosed on the spectrum, after a short time of ABA in which we were making no progress, switching to RDI not only took care of his cognitive development, his ability to attain theory of mind, but also any behaviors that he was presenting. Sometimes Behavioral Modification is necessary for short term compensations, and has its place… but stop acting like it will give our children theory of mind!
2. ASK and LISTEN.
Many families assume that routine check ups for a child with autism are for vaccinations and other non-mental or behavioral health issues. Many families have seen or are actively seeing a developmental pediatrician or psychiatrist. Ask if these professionals are accessible and helpful when it comes to the very practical issue of daily discipline. If concerns are not being addressed, send your patients elsewhere. Sometimes just talking helps families find focus and prioritize what they juggle everyday. Most of all understand that some parents will now have trust issues with you. After all, you may have been the same doctor who told them their child may need to be institutionalized or the educator that says that they don’t expect much from our child. Please recognize parents as an effective team member who has more vested in this issue, their child. They spent sleepless nights reading, on the internet, etc. Listen to what they have to say.
3. Know where to send your patients.
Do you know the specific schools or programs in your community that excel for children with cerebral palsy, developmental delays, or autism? Which therapies do you suggest and for what reason?
Not all therapists are equally skilled, which is especially true if the child is seeing a therapist via a state early intervention program. If you reflexively send special-needs patients to the triad of occupational therapy (OT), physical therapy (PT) and Speech Language therapy (SLP), without determining a child's unique needs, the family's insurance, and what your patient's Special Education Local Area Plan (SELPA) offers, you are not providing a true medical home.
One thing you can do is to enlist the help of parents of special-needs children in your practice. Ask if they would mind if a parent in need contacted them. We wish desperately that a primary care doctor or specialist had done that for us, especially when we first relocated.
This is important because it is easy to fall into the trap of thinking something is effective, but to talk to parents who has been down that road, and then see the outcome, is huge in bridging the gap from what is thought to be effective, to what is truly effective in the long term.
4. Send your patients to a Certified Relationship Development Intervention Consultant who has completed their training with RDI. Also note that each year, these same consultant ( http://www.rdiconnect.com/pages/Find-a-Consultant.aspx ) must be recertified to show they are on top of the current research on developmental milestones for our children, and what is effective long term. This is the first line of defense for our children. After a RDI program under the direction of a certified consultant is in place in the home, the program can then branch out with mindful coaches as extenders for the family and in to the school if the child is school age. It may be necessary for a behaviorist to collaborate for short term compensation. But that is not always needed. RDI is clinically proven and is an evidence based emerging treatment. It is important to keep up with research on what Autism is to know how to effective help our children long term. Typical development is plan A. We need to stop doing plan B with children on the spectrum and restore their plan A! This reduces the need for always having to react to a new behavior and is a proactive approach.
5. Advocate for insurance reimbursement.
I believe in insurance reform to treat Autism as a developmental and medical condition, not a behavioral condition. I believe that treating the underlying foundational issues of Autism is far more cost effective then trying to alter their behavior from those unaddressed gaps in development. However, I believe in parental choice. If a parent chooses to use an intervention that addresses development compared to behaviors, they should have this choice. I believe it is empowering to help parents help their children. I believe that parents are the most effective therapists for their children. Since Autism is a developmental disorder, a bond of trust is crucial between parent and child. Because of Autism, this emotional trust is crucial and was thwarted because of Autism Once a regulation of this trust is strong, coaches to assist the parent can be brought in as necessary. This places parents as part of the professional team helping their children.
If you want private insurance to help, wait until the child pulls out everybody's hair and becomes a danger to himself or others. Then he can go to the ER while he waits for a bed at a an inpatient psychiatric facility. Obviously, I am not seriously advocating this course, as it is not humane -- or cost effective. Legislation in various states attempts to compel insurers to pay for autism therapies, but loopholes almost universally allow insurers to weasel out of reimbursing for ABA.
After I chuckled at this remark of course, I realized how sad it is that this is indeed what insurance does to us!! Advocate for addressing the Antecedent of why the child feels incompetent in their social world in the first place.
6. Say NO to drugs as a first line approach.
Say this three times out loud: "No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan.
Although the AAP policy statement on the management of children with autism advocates for this approach, (published November 1, 2007; reaffirmed December 1, 2010) the AAP policy statement does not mention discipline strategies in any detail nor does it broach the subject of child maltreatment. It spends one paragraph on the importance of a behavior plan for an a child with "challenging behaviors," and then three and half pages on drugs, most of which are not well studied. There is a one page table that suggests specific classes of drugs for specific problems. Why isn't there a comparable table illustrating behavioral solutions or approaches to common problem behaviors? The policy statement assumes that you will be able to easily send the child to a specialist for a functional behavior analysis while you get ready to write the prescription.
Imagine if pediatricians or family practice physicians handled asthma this way. The child would arrive at the office coughing and dyspneic [short of breath]. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.
7. Help your patients' parents develop meaningful familial supports before crisis.
Of course an effective behavior plan requires not only an experienced professional for design but a motivated caretaker to implement. Personally, I can think of a handful of occasions when I would have benefited from a therapist in my home for intense short periods -- for example, when toilet training.
Here is one example: I write lots of prescriptions for diapers and incontinence undergarments for autistic children older than five, so that the parents can be compensated for the cost of these items. Many, if not most, children with autism can be toilet trained -- if their parents or caregivers have help from experienced professionals in this area. However, in my state, Medicaid pays for all the diapers you want but will not pay for any ABA or in-home behavior management.
This is where RDI again, looks at the why of the behavior and targets the missing milestones instead of just the behaviors. RDI targets behaviors too, which is why I agree with a behavior plans in context to the high goal of removing the obstacle through theory of mind. By addressing cognitive development, RDI addresses behaviors. Behavioral techniques that foster mindfulness are included within RDI.
8. Stop making parents the only "experts" on their child.
We do not diagnose a child with muscular dystrophy, brain cancer, or blindness, and then tell her parents that they are the real experts, but you will be available for consultation. We do not reassure parents of a child with these diagnoses that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. We should not use this approach for parents of children with an autism diagnosis.
How can we go from institutionalizing children with autism and blaming the disorder on their parents -- just 40 years ago -- to making parents the experts on autism treatments?
I like the idea of bridging this gap by "hospitalizing" the child and bringing the behaviorist/Coach to the house. I dream big. In the meantime, YouTube has great videos of families using RDI (sample search) or ABA (sample search). Autism Speaks now has its own channel.
It is sad that no physician has ever suggested to us -- fellow physicians -- that we could use resources such as online videos as a way for us to learn about therapies. Describing behavior therapies is like writing an essay about how to Salsa. Encourage families to find a way to observe it in action. Understanding each intervention and the purpose for that intervention helps parents make informed decisions!
9. Advocate for better training for folks on the front line.
Who are those on the front line? Social workers, early intervention educators, caseworkers from your state's developmental and /or cognitive service provider, special education teachers, and therapists -- those are the front-line folks you will meet. All need ongoing training -- in advances in remediation, and advances in what is known about education and behavior management for people with developmental delays. With social media and telemedicine there is no reason that individuals well-versed in behavior management cannot help children even in the most remote areas.
I know a marvelous occupational therapist who worked full time with autistic children. She cut back her hours because of fatigue. She wants so much to help train other people, but there is no way for her to make a living that way. Sometimes schools, counties, insurance companies, and large free standing children's hospitals do not want to pay for consultation with a behavior specialist, or allow their employees to take time away from client duties to get better trained. In the big picture, it would not only save money it would save lives.
10. Stop corporal punishment in schools and in homes.
Human Rights Watch reported that children with disabilities including those with autism were more likely to endure corporal punishment in schools than their typical peers. Nobody would ever know if I hit my son on a regular basis. Although he is verbal, he would never be able to articulate abuse to anyone. There are limited studies on what parents do in the home for discipline. Most parents understand that their children are fragile and different. However, they lead incredibly stressful lives with very limited respite options. They need techniques to combat aggressive behavior effectively and safely.
Subscribe to:
Posts (Atom)
