by Maude Leroux | Dec 20, 2017 | Autism Spectrum Disorder
Behavioral intervention has become standard care in the world of Autism Spectrum Disorder. As there is no “one size fits all” when it comes to intervening in Autism spectrum disorder, I salute our behavioral colleagues for their success in lobbying
their method of care and being so successful in gaining state funding in so many states. They certainly worked hard to achieve their status.
But these are the concerns I have:
- Behavioral intervention does not consider the process of development in their intervention plan. Though we all agree we would like to see behaviors decrease in children / adults, to simply focus on behaviors without looking at why these behaviors are occurring due to development going astray, to my mind is not targeting core issues of Autism, but in essence is looking at maintaining the core issues of Autism. If development can be addressed and the focus is on the profile and not the Autism, we can achieve so much more than focusing on behavior alone.
- Behavioral intervention insists that the adult decides on which areas to provide extrinsic motivation for to prompt the student into a certain action. Neuro-typical children use intrinsic motivation and their internal drive to develop and grow and do not need us to prompt them when to start doing something. Why must it be different for children on the Autism Spectrum? Is it because they have Autism? Does this mean we do not see them as ever using their own intrinsic motivation? Or is it that behavior interventionists think that intrinsic motivation comes after the application of extrinsic motivation? This would actually not be easy, as intrinsic motivation comes before the ability to adhere to extrinsic motivation in typical development.
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- Behavioral intervention states they are now more “play based”, especially as they are witnessing that interventions such as DIR/Floortime is gaining steady ground with evidence based research studies containing strong statistically significant outcomes. The idea of play is to use some play “on the floor” in-between their target sessions. Unfortunately this is far from understanding the tremendous value of play in development. Play is the work of the child, and not their “break time”. Within play they are integrating what they are witnessing every day, prompted by their own observation, practicing motor planning, ideation, and sequencing. They are working on their imagination, developing abstract thinking and preparing for the important work of reading writing, language and comprehension that comes from the body and mind. The fact that children on the spectrum avoid play or engage in repetitive play does not mean they need these opportunities less in their lives, it means they need it more. It is because children play that they can generalize their skill into different environments and learn in an integrative way, not through rote cognitive skill. With some children being in behavioral programming 20 to 40 hours weekly, when is this integrative work of the child taking place?
Play is the work of the child, and not their “break time”.
- The DSM-5 now includes sensory processing challenges as one criteria of being on the spectrum. Behavioral interventionists are now looking at “sensory rich” environments and have for many years been using “sensory rewards” for good work. This surely means they acknowledge the process of sensory being important for the child. The reason they can use it as a reward is because the child is motivated to appease their sensory systems, as this is what is really driving them. Sensory is the first process of learning, learning how to use your sensory systems in a way that you can adapt to be in any environment, coping, learning, and paying attention, not needing someone to always adapt your environment so you can cope with their expectations. How is this developing independence if we keep accommodating for their
needs? Who will do this when they are adults? The central nervous system is the piece that needs to develop, integrate, so that we do not need the
behaviors that we see. It is like saying to the child: “you will first eat your food the way we want you to eat it, then we will prepare the food”! How does this work?
- Children on the spectrum usually have wonderful long-term memories as they learn to use cognitive skill to help them cope with life. If they can retrieve a memory from the past, they can use it to evaluate a present situation and help them make a decision whether they are going to like it or not before they have even started. When we use extrinsic motivators, we are relying on this strong cognitive ability to gain as much learning from the repetitive tasks provided by the stimulus. Are we strengthening a skill that is already there and do we think that using cognitive skill is going to automatically translate to integrative learning from the central nervous system that we can generalize into all environments? What good does it do when a child can learn to count to 100, but cannot count 3 doors down to get to the bathroom by him or herself? What meaning does the use of rote
memory have in the long run? I am sure it feels good for families to see their child is now doing “3 out 5 correct” on a data sheet, thinking this is progress. But how do you track that the auditory system is actually now lining up with the visual system in order to effect sustained attention? How do you track the intricate problem solving that joins cognitive problem solving skills with motor planning? By breaking down tasks, how do we build back putting it altogether and using it by own initiative?
I am going to leave this here for today, but will continue this discussion in a next blog, as we confront some of the long term effects this already is having on the children we encounter. My heart is very heavy. I am not drawing on my opinion, but rather thinking what the natural developmental hierarchy for any child always has been and wondering why this is not good enough for the child on the spectrum?
by Maude Leroux | Nov 13, 2017 | Parenting
We visited the Moremi wildlife park in Botswana last week. You can only enter with a 4×4 vehicle, as the roads are quite difficult to travel. We had to sleep in a ground tent with no encampment, so wildlife could enter your camping area at any time. I have done this before, but as this wildlife reserve was new for me, I was caught in a number of pangs of fear as I entered into this first night with my husband. He, of course, was undaunted, which helped me, but also strangely added to my fears. I really did not want to become any animal’s meal at any time. The first night we spent at the South Gate campground, Charl decided that as the weather was clear, we would sleep without the top cover and watch the open skies through the thin layer of see-through material. For me, this covering was all too little, and as I lay on the air mattress, with Charl snoring beside me in peaceful dreamland, I was listening to every sound north, south east and west from this very lonely campsite. It was a beautiful evening and I really did appreciate the myriad of stars I was gazing at. I just could not shake the fear and felt my heart beating in my throat and my chest constricting. I could not adequately discern the distance between the sounds and the location of our tent, as sound can travel very far in the African wilds. Finally, I shut my eyes tightly with a very earnest prayer for safety and decided to “shut down” my auditory system and rather visualize a nice calm vacation on one of our favorite Caribbean islands. I willed myself not to listen and finally fell asleep.
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But as I did lie there pondering the night sounds, I did think about our kids at the practice, as they never seem to be too far away from my mind. I was in a temporary situation (of my own free will!!!), but our kids who struggle with sound sensitivity feel this way every day of their lives! It really struck home in a big way, how impossible it feels to listen to my husband’s reassurances with my heart beating the way I did, just wishing I could be away from that area at that point. Our kids cannot get away, they have to face this sensitivity every day and above and beyond these feelings of sympathetic over-arousal, they are expected to focus, learn, read and do their math. They do try to escape, but this is frequently judged as a “behavior” which has to be negatively rewarded. The only other alternative they have is too shut down their auditory system and use their other systems instead or start hyper focusing on something visually. This is when you have to call their name more than 3 times to gain their attention. Since their central nervous system is affected, they cannot access a cognitive strategy such as I did to support myself. Children with hypersensitivity to sound do not realize others do not feel this way, so they never really communicate that something is bothering them. This must be a very difficult life indeed, as the child cannot simply relax and feel safe. Charl felt perfectly safe in the exact same tent, though his safety could not penetrate my experience of the same situation. We cannot ask children to “feel safe”; it is an unconscious perceptual experience.
There are 3 major reasons why kids with auditory hypersensitivity can feel unsafe every day:
- Hypersensitivity leads to sympathetic over-arousal, causing the nervous system to be in readiness of fight, flight and shut down.
- The acoustic reflex in the middle ear is not doing a sufficient job of dampening the lower frequency sounds, bombarding the inner ear, not providing adequate protection.
- The saccule of the inner ear (part of the vestibular system) receives the low frequency sounds first, causing the body to go into an alert state, increasing muscular rigidity, disallowing the ability to relax and calm down.
We cannot ask children to “feel safe”; it is an unconscious perceptual experience.
Recent research in 2016 also showed that we pick up emotional content from environmental sounds (no kidding – tent fear!!), increasing the possibility for children to go into fight, flight or freeze when bombarded with sounds that appear innocuous to us. All the more reason why we should “chase the why” of behavior before assuming it must be willful, manipulative or rigid. Sound sensitivity can be treated and be aware that even after sound sensitivity has decreased in the central nervous system, a child could still want to hold his/her hands over his/her ears in the face of simply feeling overwhelmed or anxious for a myriad of other reasons. Sound sensitivity decreases the child’s chances of developing very necessary skills, such as motor planning, as any new and novel experience first has to pass the muster of the overactive Amygdala going into fight, flight or shut down.
By the way, the next nights in the wild were much easier. My system normalized and as elephants were cracking down the limbs of trees around us on the second night, I fell sound asleep!
by Maude Leroux | Oct 12, 2017 | Parenting
“Moira is so rigid! She wants everything her way and no other highway! Her siblings are fed up that her choices always seem to rule and her friends are tired of being bossed around. She is so self-centered and it is all about her. She keeps everyone hostage so that if some event does not go her way, there is great upheaval and no one gets to enjoy anything that we plan together as a family. It is like she has no empathy for anyone else. We know she has her sweet moments and we see glimpses of a softer nature underneath, but these moments are so spread apart that for the most part she leaves us exasperated.“
This is the lament of some of our parents on an almost weekly basis, though in varying degrees of occurrences. It is a tough behavior to deal with as most families simply want to enjoy their home and activities together and need the flexibility of changed schedules, venues and activities based on everyone’s needs. Many families reach out to behavioral therapists to “curb” the behavior or to drive this behavior to extinction. It frequently ends up getting worse rather than better. This is because it may manifest under the “behavior” category, but the reasons for this behavior is the key to planning the correct intervention.
The number one reason for this rigidity in behavior is that Moira may be struggling with anxiety. This anxiety may be rooted in aspects of her development with regards to emotional milestones. Children have to develop through several layers of emotional stepping-stones that would provide a rounded maturity that would prepare her for her social sense of self. Every typically developing child has to face different fears and anxieties as they grow into understanding their world and sometimes they can be stuck in facing these fears making the “fantasy” of their fear becoming larger than life. Because she is cognitively developing, we do not see this emotional developmental delay that is causing unreasonable anxiety and it is holding her back, disenabling her to match her cognitive IQ with her emotional IQ.
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A second reason, very close to the first, is Moira’s sensory profile. Her sensory experiences may be causing her to respond to environmental stimuli in ways that are causing great physical insecurity. If she is not comfortable with the lighting in a room, the sounds in the background, the “feel” of her clothing, the taste or texture of food, she may respond with rigidity simply as a way to control her experiences. As she cannot rely on her body to interpret these experiences well, whether it is under registering it or over registering the information, she would need to contain the experiences she is exposed to in order to gain better control over a situation.
Because she is cognitively developing, we do not see this emotional developmental delay that is causing unreasonable anxiety and it is holding her back, disenabling her to match her cognitive IQ with her emotional IQ.
A third reason would pose the possibility of Moira having motor planning difficulties. Our brain tells our body how to move and how to arrange activity in a sequential manner while continuously adapting to new and novel changes in a fluid and flexible way. Moira may have difficulty adapting to a new motor plan and therefore tries to gain control by doing everything the same way or not tolerating changes very well as she has to renegotiate her troubled body each time to adapt to the change. What becomes automatic for other children, as their developing bodies grow into new and different experiences, never really becomes automatic for her. Think about learning to drive a car. It is almost like you have to face the learning to drive over and over as you never seem to get the hang of it. There are too many variables to consider and the adjustment each time asks too much of her.
All three reasons can be addressed by a thorough evaluation and it can be addressed. As Moira may be quite intelligent, families will mostly try the behavioral routes first because it does not make sense to them that they know she gets it, why does she not change or adapt to other’s expectations. But what they do not know is that she has no idea that her body and emotions are responding in a different way than theirs. She is unable to tell them what is really at the core. All she knows in her subconscious, is that it feels better if she could simply control or “boss” everyone so things could go her way and she could protect herself from having to adapt to too many unexpected changes. Most of her behavior is rooted in self-protection and it requires specific intervention to reach the core of her issue and to start change from within. There is no child that does not want to feel successful, no child that at the core does not want to please their parent, but if their developing systems are at war with expectations, the first human behavior they will turn to is self protection. And this is true for all of us, we all have this instinct in times of trouble and Moira is no different. There is always a root cause and the answer does not lie in addressing behavior alone.
by Maude Leroux | Aug 28, 2017 | Parenting
I frequently walk the hallways of our private practice and my ears pick up the sounds of enjoyment, laughter and escalating arousal in a fun way. Whenever I hear a child produce a deep belly laugh, my heart warms within me and I simply have to share it with my own smile. When children run up to us in the waiting room and clearly show looking forward to their sessions and it is “me, me, me!” it is a profound moment of joy that fills my soul! Of course my thoughts wonder in the direction of what this must mean for parents?
We are living in a culture today, where product is celebrated much more than process, a difficult fact to reconcile with children, because all development is process. When we “expect”, we demand performance, and this performance may be elusive in the child that is still developing. I wonder how the parent is coping with messages such as: “You only have this window of time” or “ You have to close the gap to get him or her ready”. What are professionals really saying to the parent?
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That the child is in dire need of performance with an ever-changing time line that increases anxiety?
That each time the parent witnesses a milestone in their child, they already start thinking of the next one?
- That when the child shows behaviors that seemingly was overcome before, the child must be “regressing”?
- That when the child melts down it must be something we (the parents) are doing wrong, the therapy is not working?
- As soon as the child plateau’s, we worry if the child is “standing still” and the push comes to find something else that works better?
- That the child is to be viewed through a lense of weaknesses, forgetting the multitude of strengths to be found in each person?
When we “expect”, we demand performance, and this performance may be elusive in the child that is still developing. I wonder how the parent is coping with messages such as: “You only have this window of time” or “ You have to close the gap to get him or her ready”. What are professionals really saying to the parent?
We also live in culture where family time is becoming less frequent and the intimacy this creates is elusive as time is a factor to consider. I want to provide parents with a few points to ponder:
- If typical development was good enough for your typical child, it is going to have to good enough for atypically developing child.
- Development is gradual, always an every day process, but the evidence in “product” goes in “hiding” as the child works the subconscious brain to consolidate the new information.
- When the child does not show progress in one direction, always look if anything else is changing for the better, as it is a common occurrence in early development that each skill often is developed separate, then becomes integrated with the rest. While this happens previously attained skills can go into “hiding”.
- That developing children are always living in the moment and are not worried about their school placement for next year or who they going to marry one day. The parent’s worry does not always match where the child is at.
- Development continues to develop even after the therapy session is over.
- When we expect more of the child than the child perceives he or she can cope with, we are asking them to create compensation and work very hard, increasing their arousal and threshold for frustration.
- The child does not know that his / her body is receiving information differently, they simply “cope” so by the time we challenge them, they are already anxious and working so much harder to overcome.
- What kids want most of parents are their attention, love and validation.
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What to do?
Spend time with your child doing the things they like, even if it is 15 minutes
- Observe your child and find moments you can validate and give them compliments
- Find what they doing well and focus on it, rather than what they are not accomplishing yet
- Connection before correction, your relationship comes before your expectations, so the child would be more ready to accept challenge
- Revisit your family time over dinner and make that time special, talking about lows and highs. There is a reason why vacations are usually good for all in the family. Everyone is less stressed, less expectations, simply enjoying each other more. You do not have to do this all day. Just continue doing this over specific times and let the child know you are interested in what they are offering from themselves.
- It is the warmth in relationships that we all crave and that is a function of being human, your child is no different, they crave as much time with you in simply bonding and having their secure base (you) to surround them with emotional security.
- Stay in the moment, they will develop anyway without your anxiety of needing to propel them forward. Of course there is place for your anxiety and discuss this with your child’s therapist or your own therapist, you have a right to feel worried about your child’s future.
I hope this is a helpful start. Also know I am doing a webinar on “10 Golden Nuggets to empower your parenting” on September 13, 2017. Please contact me at maude@atotalapproach.com if you want more information.
by Maude Leroux | Aug 2, 2017 | Praxis
I had the occasion this past week to watch a BBC documentary that was really amazing and the story was for every parent out there that has a child with Sensory Processing Disorder. It is the story of an older gentleman who woke up one day to find that his total sense of proprioception was gone. He had no idea how to feel movement and literally felt completed disabled in his ability to use his body. All of his muscles were there, he had the joints, but the brain had lost all sense of “feeling” movement and therefore the body could not be commanded to move.
So many times I have found myself trying to explain to families what it really feels like for their child. I would say to them things like: If your child gets his arm in the sleeve, he has no idea how to produce the arm to get to the other side. As soon as his eyes could no longer see his arm, he would be unable to produce the movement forward. So many children come to us with the label of being a “visual learner” or the parent would say that before their child engages in a new and novel activity, they would first watch with their eyes before making a decision to join or not. When we do Interactive Metronome testing, it very frequently is the exercises with “both heels” that are the worst score because these are the only tasks on the test where the child cannot see where the trigger is located for them to reach.
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The main character in this documentary decided he was not going to give up on life and figured out how to use his vision to plan his movement forward. He re-taught himself to walk by using compensatory vision and went further to add gestures to his communication. It is an amazing story and one of great dedication and hard work. He finally got to scientists who wanted to figure out what this meant. With brain scans they found that when he engages in movement his right occipital lobe lit up very strongly, showing a lot of hard work in that area of the brain. I wish they had shown us the comparison of a person with an intact nervous system as a comparison, but I remember from multiple trainings that several areas in the brain are supposed to light up, crossing over into the parietal and temporal lobe.
Bottom line is that these children have to work much harder than their peers to accomplish anything with their body and they frequently get labeled as a “behavior” problem with no acknowledgement whatsoever to the strength and determination they are using to cope with every day activities.
The scientists were astounded by the amount of work that had to occur in the occipital lobe to achieve what this man had done. He had the intrinsic motivation and drive to get beyond his difficulty. The documentary never went into detail as to the origin of “how” he may have lost his proprioceptive sense and they assumed it fell under the domain of “acquired brain injury”, which really meant that they had no hope for this sense to return again.
In children with developmental delay, who struggle with sensory processing disorder, this particular sense impacts greatly on the development of praxis or “motor planning”. The profound impact of this can be more clearly understood in watching this documentary, but in essence it means that when one sense is not doing the job correctly, other senses have to step in and take over. And, as with this man, children have to work incredibly hard to do it. Some children develop stereotypical behavior, that we call “stimming” or “ticks” when they seemingly involuntarily start moving their body. These are nervous system responses to a non-integrated nervous system. Other children want to crash and bang into things, will squeeze you too hard, will bite, pinch and hit hard in an attempt to feel, and because of their limited understanding, would not even know if they are hurting you. Others would even go into self harm as they attempt to simply just “feel” something and the more frustrated they become, the more they lose any gainful compensation and the desperation fuels further self harmful behavior. Others are more “silent” and simply avoid participation in any new and novel activity that they have not figured out with their eyes as yet and even then, they may decide the effort is too great. And so we have the trajectory of developing a praxis difficulty, more specifically called a somatodyspraxia.
Bottom line is that these children have to work much harder than their peers to accomplish anything with their body and they frequently get labeled as a “behavior” problem with no acknowledgement whatsoever to the strength and determination they are using to cope with every day activities. Thankfully, as this is seen under the category of developmental delay, it is not a brain injury, and lack of development in this system can be woken up with therapy. My heart goes out to all those children who have no idea that their bodies are reacting differently to life than their peers, who are trying hard to keep up even at the cost of frustration and behavior and whose self esteem is being attacked every day due this enormous insecurity in their bodies.
I am including a link to my facebook page so you could view the documentary directly from the post I made just a couple of days ago. Please watch it.
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