Nadia’s Story, Our Journey

Nadia’s Story, Our Journey

More than a testimonial, this story captures the true essence of change from within.

I was digging through piles of unopened mail from our office during Covid19, when I came upon a thicker than normal envelope. I opened the envelope and two pictures tumbled out of a very lovely young lady that looked vaguely familiar. I let out a gasp of lovely surprise to discover that Nadia had graduated from College during May 2020! Memories came flooding back of working with my very first autistic girl in my private practice. 

I remember her mother and father very fondly and in those early years; I had no physical center and was driving from home to home in a red VW bug with my equipment lugged in the back of the two-door car. Nadia had a little sister and when I drove up to their house, both of their faces would be pressed against the living room window waiting for me to arrive. I was always welcomed by mom, Brenda, and though Nadia was anticipating my visit, she shied back behind her mom each time I entered the house. I would put the equipment down, take my shoes off and leave Nadia to go through my bags to find what I brought, while I spoke to mom. We worked long and hard on engagement, gaining her trust and working in her home helped her to let go of the “fight and flight” a little easier.

A funny memory that I often recall in my trainings, was when we were playing with a tunnel one day and she refused for me to have a turn in the tunnel. She did not speak much in those early years and I lamented in a whiney voice that I really wanted to go through the tunnel too. I can still see her cute little face scrunching up and looking at me exasperatedly. Finally, she found words: “You are too fat!” Brenda was mortified; I was elated! She did not say “because”, but this was my first inkling that she was capable of reasoning! 

My husband built me a center in our first home living in the US. We transitioned her therapy to the center. I was so excited for her to come to my center and being a girlie-girl myself, I went out to purchase an entire Cinderella playset with blue castle and all. This was one of her favorite stories and I positioned it just as she came into the door. She had to see it. I so wanted her to get into more robust pretend play to engage her abstract thinking and thought process. As she came into the door, she picked up a “wrapper-snapper”, an accordion like plastic tube that could be pulled out to lengthen, then be scrunched back to shorten again. Nadia never even looked at my castle, and we proceeded to have a two-hour session of  more “wrapper snappers” that became snakes living in caves, with monsters and bears instead. I discovered that day that I can have the best intentions as the adult, but in a safe relationship, when we follow the child’s lead, the child will forge her own way into developing where she needs it. It was not my Cinderella castle, but we were doing the “pretend”; working on emotions that was hard for her and therefore her focus: fears and anxiety. I was facilitating, but she was teaching me. 

Nadia was an extremely picky eater and one summer we arranged a “lunch bunch” at her home every Wednesday afternoon with the neighborhood kids. We wanted to create the social atmosphere that food brings to an event and work on peer relations in the process as well. Brenda’s house was always immaculately clean, but she was game to enter the world of playing with food, messing up her kitchen and allowing each child a “spit bucket” that should they try any food they do not like, they were allowed to spit it out. We had food everywhere, on our faces, in our hair and the kids were having loads of fun. Nadia was quiet and did join in, did smile, but not once in the entire summer did she put a new food in her mouth during these sessions. Brenda called me about the fourth week in, later that afternoon, stating that Nadia put a pretzel in her mouth the first time. Once again, we learnt we could facilitate, but change was going to happen on Nadia’s terms! 

There are many memories with Nadia and a blog has only so much space. Perhaps allow me one more memory of an incident right before she exited our program. Brenda asked me to do a final school observation. I remember feeling so warm inside myself as I noted that no one would be able to discern her as being “different” from her peers. She blended in and followed instructions, even if she was quiet compared to her peers. Her teacher was smiling at me and I smiled back, both of us quite proud of her. I followed along as the class left for recess. She ran out to the playground with the others and in the process ran past another girl sitting by herself on playground equipment. While everyone else was rushing into the fields, Nadia stopped, went back to the other girl and asked: “Are you lonely? Do you want to play?” My heart swelled as I witnessed a precious moment of the girl she has become; a compassionate, warm young lady with empathy for others. I cried on my way back to the center and once I collected myself, I called Brenda, related the story and we both knew it was time to let go.

Now, she has graduated and is facing life with an independent spirit, still negotiating the troubles and relationships of this life, though with joy and fullness, able to show her intelligence and her empathy. Nadia taught me. My early ventures into DIR/Floortime was with her, and together with her lovely mom, dad and sister, she was able to work through fragmented pathways and become a beautiful young lady with a future shining bright before her. I am so grateful to have been a part of her process; her journey and I wish her many more happy years to come.

 Congratulations, Nadia!

A Diagnostic Dilemma – Autism (ASD) or Sensory Processing Disorder (SPD)?

A Diagnostic Dilemma – Autism (ASD) or Sensory Processing Disorder (SPD)?

This issue is becoming more crucial as we speak. We all believe in early Intervention and providing a diagnosis as young as possible. In order to really explain this question, let us first look at defining the issue in simplistic terms. ASD is a neurobiological disorder impacting function on a wide front of occupational and social functioning and includes sensory difficulties as part of the diagnostic criteria. There is a wide variety of functional ability in different individuals with ASD with cross over into multiple different diagnostic categories including ADHD, OCD, ODD and multiple others. A core issue of difficulty is that social perspective taking (theory of mind) are severely impacted, causing much difficulty with emotional and symbolic thinking such as building empathy. This is not a formal description, but a description containing key elements to the topic.

SPD is a neuro-developmental impairment that may contain elements of both the central and autonomic nervous system. This causes deficiencies in activities of daily living, learning, play, and social skill. Again, here we are looking at a wide variety of profiles, but we are not looking at core deficits such as theory of mind or central coherence (ability to generalize skill from one environment to another). Yes, just as in ASD, these clients can also appear “self-centered”, exhibit stereotypical behavior or line up their toys, but as soon as the child with SPD finds balance in his / her regulatory system and are able to understand incoming sensory information, they are capable of joining the world around them and negotiating theory of mind is not a large work. The autistic child however, is a different story. Their difficulties lie beyond their sensory systems and not only does it take longer to impact on their sensory systems, but it is a long road to work through theory of mind and gaining social perspective over different individuals in their lives.

The importance of this lies in what kind of services both diagnostic categories will be offered. Let us take Barry for example. He is a 3-year-old boy recently diagnosed on the ASD spectrum. As his brain is still undergoing development with an ongoing myelination process, his sensory profile is going to look similar to Eva’s, who has SPD. Barry will be offered ABA through his service providers as in most states this would be the only option available that would be funded. ABA has no research on theory of mind and therefore does not consider this aspect and is mostly focused on any kind of skill to be learnt or behavior to be unlearnt. It plays into central coherence as it teaches skills in specific domains and it frequently does not transmit over into other domains. The whole premise of ABA is that it relies much on prompting, not on the intrinsic motivation of the child. Barry would be taught through long term memory, a particular cognitive strength in ASD, and not through working memory that requires the act of problem solving to develop the richness of being an independent thinker. ABA shows success in their data as it plays into the strengths of ASD, but it does not target the core issues of weakness as noted above. Eva will go into play sessions, OT, and SLP, and she will immediately be required to use her thinking brain. As her sensory systems settle, her ability to entertain and reach out to others will grow far more rapidly.

What if Barry was misdiagnosed and goes into a 20 hour a week program of skill training priming his yet unmyelinated brain to think in long term files, suppressing his individual preferences, and not working on social problem solving in a way that he could be capable of? How is his brain developing? Are we then creating autistic like features, instead of working on what his true capability may be? I have seen such cases. I have seen them leave my practice (private pay) for services that are government funded and after one year of ABA, I have no proof, because we are now looking at a child trained to think in autistic ways, trained in his brain to not use what was there, but to lose it. The growth of the developing mind is a true scientific fact and it is true that “what you do not use, you lose”. Typical children learn through play, through experiences, through trial and error, but a major chunk of Barry’s time will be spent in trying to get him to stay seated, to behave, to pay attention, to “sit on his hands when they flap”. And when he protests, as his psyche wakes up to himself, the reason would be that it is just another “autistic” behavior, and we try to inhibit the budding spirit even more. We are in a very sad situation as we over focus on behavior at the cost of brain development. I do not want to be right in what I am saying, but if I am, what are we going to do about this? Government officials, who mandate such funding have a responsibility to investigate and at least start thinking about providing the families with choices in funding. I love the idea of intensity and would love to have 20 hours a week funded for us to play therapeutically and really let the child’s creative juices flow. Right now, there is no such opportunity and sadly, some children are never going to get the opportunities they deserve. Please think about this.

Symbolic Emotional Capacities in Autism Spectrum Disorder

Symbolic Emotional Capacities in Autism Spectrum Disorder

This is the third and last blog (for now) I am writing with regards to behavioral vs. relational approaches in intervention. We have covered essential ground in these past months and we want to take these thoughts even deeper at this time. I spoke at the ICDL conference hosted by the amazing Rebecca School in New York this year. My talk was on this very topic of symbolic thinking. I showcased and reflected on a number of seminal cases over the past years. In preparing for this talk, I was once again struck by the children who taught me and was pondering the use of “high” vs. “low” functioning Autism. I will illustrate through a special girl that I have come to care for dearly.

I have been working with a lovely girl (we will call her Amy) for multiple years now, though we have been working in a very non-traditional way. The family lives too far from our center to visit, but our Floortime player lives closer to them. We designed a program where she would visit the home once monthly for 3 hours each time, video record at least 2 hours and edit the video. I would then review and narrate on the material before it was finalized and sent back to the family. I do this practice for many clients and therapists across the globe, but Amy took this work to a deeper dimension. We always add a disclaimer on the video to not watch the footage with the child present. Well, in this case, this notion was not followed and we only realized this 3 years into the process.

The videos were numbered and upon one visit, Amy mentioned a number to her mom and mom immediately located the number of the video. Amy fast tracked to a certain place in the video! Long story short, these videos became a lifeline for this growing young girl. When Amy became a pre-teen, she would start requesting mom when it was time to have our play partner (Janine) visit her. Amy would plan the visit to show Janine different pieces she wanted to have on video. At this time, I was providing Amy with a little “life” lesson at the end of each narration, where I was talking directly to her. I had never met her, but she knew my face, my voice and she referenced me as Ms. Maude.

She would then say on the video “show Ms. Maude” or simply “Ms. Maude”, as Amy experiences great challenges verbally expressing herself. After we did Tomatis sound therapy for one year, she started vocalizing and saying many more words, so we recommended voice lessons, which mom promptly started. Since then, she has performed in local concerts arranged by her voice coach, as she finds it much easier for her to express through song. When Janine visits, Amy would do a number of things to lead us along within her mind to a topic she wanted clarity on. She would sing a certain verse, go through the house and point at different pictures, open her wardrobe and point to certain clothing and, as the time goes, we are then able to piece her communication together.

Our first discovery of this was when she wanted to explain her feelings of embarrassment when her mother corrected her in front of her peers regarding the height of her pom-poms during a cheerleading performance. She wanted me to talk with her on the feeling of embarrassment! And so many other feelings followed: rejection, disappointment, envy, her need to have what others have, etc. Many nights, Amy would fall asleep by the sound of my voice. (Please let us not make this about me, it was all her.)

We did meet once in later years and she simply could not really connect, though we all knew she was acutely aware of me. Her connection with me was through video. She could rewind and review videos for hours in order to make sense of her emotions as she is not expected to respond and is in complete control as to how much she was able manage at a certain point. In her own way, she was connecting different files in her mind and has been able over the years to connect many emotional dots for herself.

Amy is much more social today in her own way, even though she continues to struggle with verbal expression. I hope to one day work with her mom to write up her case study. She helped shape my process of understanding how much autistics do have the capability of symbolic emotional thinking. She persevered and struggled through and found a medium that she could use with which to communicate. Her mother is an amazing woman, who “feels” her daughter’s needs – Mom’s response to Amy is directly linked to Amy’s ability to follow through.

I am hoping this case speaks to you as it did to me. Autistics are symbolic, we have to help them to find a way to express in safety and security. If we only see the surface, if we only consider their atypicality as “different” from ours, we are missing the soul underneath. We are causing these very big emotions to remain suppressed, unanswered, providing a message that what they feel is not important. How would it feel to never have your emotions validated? Is it not safer to simply remain in your own world, do things by rote memory as it does make life easier, but not to be enjoyed for who you are? Each autistic has an inner sense of themselves, they are no different from you and I. We have an obligation to them to dig much deeper.

I know this was long, but a final thought as we conclude: The pendulum always swings to and fro. Right now, behavioral therapies are enjoying a great time of acceptance as it is the only model that is covered by insurance. As time goes by, more and more parents will realize that behavioral therapies do not lead to complex social thinking and, as this is a basic essence of life, they will start to question legislature for providing only 1 option of care for their child. When that day comes, I really do not want to be the person sitting in that seat that has to answer to a group of angry parents. Many years will go lost before this really happens, but it is inevitable.

Coming back to discussing high vs. low functioning autism, we really have to think about what we are saying. Are we saying “low” functioning because from the outside they appear to look more impaired, or perhaps have a lower IQ, or a slower response rate to intervention? Any of these will provide professionals an excuse to not need to dig deeper and find the real person underneath. Is it true that these options can exist? Of course it can, but it should not be a reason for us to assume by judging a book by its cover. Everyone deserves the right to be “known”, just as all of us have the right to make known what we want others to know. As professionals, it is our job, our work, to find the missing link that will provide the key to the inner world of each client in our care.

Developing Social Skills and Autism Spectrum Disorder

Developing Social Skills and Autism Spectrum Disorder

Part 2 of fundamental differences between behavioral and developmental approaches in Autism Spectrum Disorder.

I am currently on a 7-day course on blending attachment theory with sensory processing theory in a very practical way. I am looking at videos of children and reflecting on our kids at the center. It feels good to not be the presenter and simply taking the time to listen, reflect, and add to what I already know. To my staff’s dismay, though secretly they enjoy it, I am again thinking of changes I would like to make!

But the topic of attachment is fascinating. It starts in utero as the baby is also exposed to what the mother is exposed to. The baby starts the sense of smell quite early and listens to the mother’s voice by 5 months, though some books say 4 months. They cannot understand the language, but they can get the cadence and prosody of the mother’s voice, which conveys mostly emotional tone and this occurs with bone conduction through the spine as it ripples into the womb. Once the baby is born it is that emotional tone they seek when they burst into this sudden change from fluid to air and there the love affair visibly continues in earnest. I do not think anyone could have hardened heart when watching a mother nestle the baby’s head in that special place just under her shoulder. From this time through the entire lifespan, it is this mother that we bury deep in our subconscious no matter the environmental circumstances.

You can teach social manners, but not the complexity of social skill.

We have come a long way from believing that children on the spectrum do not share this same yearning. There is so much literature discussing the importance of the co-regulation occurring naturally between mother and baby and how this bonding keeps affecting other relationships in our lives. Some families noted the difference in their child from the first month of life; other say it happened after about 18 months, though most agree that co-regulation has always been difficult. As the child’s autonomic nervous system does not provide the adaptive response they need in order to cope, their behavior becomes difficult to read, causing the parent to feel disarmed and alarmed at their seeming own inability to follow their natural instincts. They “lose” their ideal baby to feeling dismissed, rejected and also incompetent, thinking it is about their parenting. They search for help and family members say all kinds of unhelpful things though they mean well. “Do not worry, they will grow out of it” or “I raised you this way, so you should be doing this” and other “helpful” hints. Still the mother struggles to establish a co-regulation with her baby. She visits the doctor and voices her concern about the child’s difficulty to be engaged in a co-affective behavior. Her instinct tells her something is wrong, but she is also afraid that she could possibly be to blame. The doctor states “to give it time”, “he is just a boy, they take longer to develop”. The mother feels again that maybe she is over-reacting and that she must stop feeling anxious.

If there is an emotion children on the spectrum share it is anxiety and it is this anxiety that rules their adaptive response. They also cry out for attention as other babies, but due to their difficulty adapting to the environment, the mother cannot find the right sensory pathway to assure her child of her love and care. As the mother’s anxiety rises, her child feels her anxiety quite intensely. Trewarthon gave us the term “intersubjectivity”, which considers an innate ability that seeks strength from the mother child bond. Think about when you are looking at your significant other and you know exactly what they are thinking and the look from your partner tells you they got it too. Research with one-month old babies and mothers engaged in “motherese” (that special baby talk) showed that exactly the same places in both the mother and baby brain lights up as they “talk” their own language.

Anyone working with children on the autism spectrum will know that they are keenly aware of any amount of tension in the room. They remind me of the deer I love to watch in Kruger Park. As they bend their necks to drink water, their ears are forever moving, checking the environment for danger. In their primal brain, they live in an eternal cycle of fight, flight and freeze. Children on the autism spectrum are just as vigilant of their environment as those deer. The difference is that they are supposed to grow into making sense of their environment. They should feel secure enough to mature into understanding that the environment holds no threat; that there is no danger. A loving secure base in the mother would have provided them this ability had sensory adaptive systems not gone awry. It has to feel painful to experience this disruption of such a primary “right” of development. Mothers continue to search for the answers and techniques that would allow their child to seek their loving arms.

Why am I going into this detail? If this mother-infant bond is good enough to set the stage for all typically developing children in order to grow and mature, it is no less necessary for the child on the autism spectrum. Relationship is the essence of growth and research has shown that this first bond also fosters brain growth. The child on the spectrum is as much in need of relationship as any other typical peer. Their vigilance with regards to discerning threat however, overshadow the relaxation they can find in their mother’s arms, and when sensory thresholds are over-activated, the first response is to use a short circuit to the limbic Amygdala (low road), which does not allow for logic to enter into the equation (high road). Of course there are different ranges of profiles on the spectrum, but the needs remain the same.

So this is my concern: What are we teaching children on the spectrum about relationship within the behavioral method? Is relationship about performance (the task) or is it about creating a love bond that would form the foundation of being social and developing empathy? Why are behavioral therapies so sadly lacking in developing social-emotional skills? This is a question, not an attack. This is a core deficit of Autism Spectrum Disorder and it does not appear to be enforced nor developed by behavioral techniques. The answer lies in re-establishing the mother-child bond and fostering a joy between them that can overcome the Amygdala short circuit, and build the intrinsic motivation that will create the willingness to want to be a part of our world. You can teach social manners, but not the complexity of social skill. Sadly they are not equal in attaining quality of life. To be social-emotionally skilled is to start with the bonding relationship and to use this secure base in developing the child into a fuller, more conscious person that does not have to live with fight, freeze and flight all of their lives.

5 Fundamental Differences between Behavioral Interventions vs. the Developmental Perspective in the Intervention of Autism Spectrum Disorder

5 Fundamental Differences between Behavioral Interventions vs. the Developmental Perspective in the Intervention of 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?

Raising the bar on Autism

Raising the bar on Autism

We were sitting at an IEP meeting at Eric’s school. The discussion was amiable and the goals were being discussed. Everyone agreed that Eric has come far with the combination of his school, clinic and home program. Jokes were shared about events of the past and we felt pleased that he was really moving along. Eric was included in a regular peer setting for half of his day and pull out services for especially language and reading was part of his program. I suggested a goal for conversational turn taking with two-way communication, stretching his circles of communication into longer continual discourse. One of the team members looked at me and exclaimed in a surprised tone: “But Maude, Eric has Autism?!”

What is it about a diagnosis that makes people feel we have to “stop” somewhere and not expect anything more? The evidence of growth was clear-cut in Eric’s case and he was doing well. Why not expect more of him? Do we even think what would happen to Eric’s life goals one day in becoming self sufficient if he could not partake socially? What if it were their son or daughter?

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I have witnessed so many children move on with their lives despite their diagnosis. Of course the diagnosis is kept in mind, but we design intervention based on who the child is and what constitutes the child’s strengths and weaknesses. Any child is so much more than a “score” or a diagnosis. Development demands that the child be considered a growing psyche, a growing sense of self. If we take it upon ourselves to stunt this growth, to pit our “knowledge” against the development of the child, we would still be in the age where autism was regarded as a product of “refrigerator mothers”! How far have we not come in the last decades in our understanding of the different shades of Autism? How can we at any moment think that we have now reached the “limits” to any child’s Autism?

What is it about a diagnosis that makes people feel we have to “stop” somewhere and not expect anything more?

There is also a current trend that is totally enamored by autistic-like behaviors. We look at a child’s behaviors through our lens of what is considered appropriate in our social context and this is true, we have to draw a comparison in order to decide on the right goals. But for some this thinking is taking it to another level. They view the child’s behavior as “proof” of his diagnosis; as a feature that should be extinguished because it does not suit us in the “typical” world, as if the child’s total reason behind these behaviors would simply be because they insist on looking different and it is “willful”. Of course we want to decrease the necessity of these behaviors, but in order to do this we have to understand why.

A child’s behavior is their communication to us what they cannot communicate in words. If they are flapping their hands they might be trying to have quick access into the vestibular system in order to find their bodies in space. If they are finger flicking in front of their eyes, they might want to access movement in their brain through visual stimulation. There could be many reasons behind the behaviors and I find it quite disrespectful of any human being to be considered as an entity whose very communication, due to a diagnosis, by the way, with known strong etiology, is going to have to be “extinguished”. To me it diminishes the child and his growing psyche within.

Yes, we have to pave the way to clearer and more effective communication, but to do this we need to turn to development and rebuild the building blocks that were missed to the furthest extent possible in order to give children such as Eric the best chance to overcome the many obstacles in his path. To do this we have to understand Eric and move into his world, so we could find the link to draw him out to our world is a way that would be non-threatening as well as being respectful.

One last thought I have is to think about how many professionals I have come across who still think that kids like Eric, due to their diagnosis, do not need to relate with others, that he somehow does not need people in his life and that this makes him “happy”. There is not a human being in this world that does not want to connect and that is not hardwired from utero to want to connect. I have found the most marvelous connections with children of any diagnosis, but especially Autism, and we are making a mistake to think differently. So many times we prefer to think what we think, not raising the bar when we should, due to the limitations we put on ourselves in not knowing how to intervene or plan the next move. It becomes easier to simply believe it can not be done, otherwise we have to figure out how and why.

Maude’s book,” Our Greatest Allies”, co-authored by Lauren O’Malley, is available on Amazon and Kindle and relates the journey of her intervention, while it also depicts the journey of his family.